Rarity Life Issue 6

Living your best LIFE

Rarity

HELLO!

We are delighted to share Issue 6 of Rarity Life magazine with you, and hope you enjoy it as much as we have enjoyed working on it. As a team we feel so lucky to be able to bring to life and to share the unique stories and experiences of our rare disease, disability and cancer communities. To have the opportunity to create content that is truly inclusive, and to unify our collective experience and to celebrate and share our differences is truly an honour.

Although our experiences might be individually rare, together we have the opportunity to be heard as one, to make our voices loud enough to be heard. Working collaboratively is at the heart of what we do, and so when we were asked by the team at Face Equality International to create the photographs and films to support their campaign for Face Equality week 2023 we didn’t hesitate to say yes. You can read about the amazing individuals taking part in the #WeWillNotHide campaign here in Rarity Life. As ever we are most grateful to our contributors, and to you our readers, together we can make a difference.

Ceridwen Hughes

Same but Different

MEET THE TEAM

Ilmarie Braun

Claire Li Gareth Jones George Irwin

Katy Parry

Ceridwen Hughes

Style

4

A swan who has found her voice

CEO focus

Phyllida’s story with Phyllida Swift

Walking funny with Jack Carroll What we’re into reviews

We’re a team with Neil McKelvey

38 Accessible travel

Sun & fun in the Algarve stunning Vilamoura

42 Rare tales

Rare tales with Laura Mathias

54 Young voice

Why should he change? Eric’s Story

58 SbD focus

Revisitng Katja living with Moebius Syndrome 70

5 questions

5 Questions with Michael & Paul Atwal-Brice 73 Directory

who has f und

In elegance, beauty, difference and full voice, Phyllida Swift travels the world informing of the campaign for facial equality. Every individual she encounters along the way has a story to tell and a voice to be heard. United by differences and driven by goals for change these beautiful souls are gathering for Face Equality week 2023 with a message for the world. They sing out in harmonious tones ‘we will not hide’, with pride and grace. The message glides through the air, loud and proud, for all to hear.

Dress: Feather Detail Plunge Dress

£229.00

Sizes 6 to 18

www.coastfashion.com

All photographs by Ceridwen Hughes Assistant Claire Li

Makeup Laura Wisinger

Dress:

High neck sequin

faux feather trim

mini dress in silver

£120.00

Sizes 4 to 18

www.asos.com

“Our voices deserve to be heard and our faces deserve to be seen. Unfiltered. We are proud to be ourselves.”

“It lit this fire within me to want to prove people wrong and say, ‘I will feel confident and I will feel beautiful’.”

Phyllida’s

Phyllida Swift is the CEO of Face Equality International and works worldwide to advocate and campaign for face equality. Phyllida first became passionate about face equality following her accident at the age of 22.

“I acquired my facial difference in a car accident in 2015. I was volunteering in Ghana and we were travelling overnight in a van when we crashed. I woke up and put my hands to my face and immediately realised it was cut open.”

It was on the first day of her trip to Ghana that she suffered facial injuries and a broken spine in a horrific car crash. She told us of her struggles, at first, to accept her facial differences.

“Being a 22-year-old girl, midway through university, it was a big adjustment. Suddenly I looked like a completely different person and had this thing stamped across my face, that I knew society largely saw as ugly and not something desirable for a woman. Something that is

seen as a mark of a villain or a vulnerable person. So that was a massive adjustment for me, particularly at that age.”

With large amounts of media attention following her accident, Phyllida struggled at times to accept her appearance. Her quest to change society’s representation of people with facial differences began by first coming to accept and love her own.

“Suddenly having facial scars and looking in the mirror, I almost saw two sides of my face, I had to re-learn how to do my makeup. There was the side of my face that I recognised and there was the other side that I tried to not really look at. It didn’t help that they sewed half my eyebrow back in the wrong place, so I couldn’t really do my eyebrows in a symmetrical way anymore. I tried to hide as best as I could for a period. I tried to have a fringe cut in to cover up as much of my scar as I possibly could. For a time, I stopped wearing

bright clothes or wanting to attract attention to myself and I just became a bit more introverted.”

Phyllida began working with Changing Faces as a campaigner to spread her message of equality for all, regardless of facial differences.

Through drive and passion, she strived to spread her word near and far.

“I started to notice the stares or the comments from people that were well-meaning, but that just infuriated me. I hate the idea that someone might think ‘Oh, she’ll never feel beautiful

Photography by Ceridwen Hughes

Her impressive work with Changing Faces saw her appointed CEO of Face Equality International. In her new role Phyllida has focused on how the media portrays people with facial differences, intent on changing the narrative and public perceptions.

“I think the way that facial differences are represented and having positive normalised role models in the public eye is vital. I had a few people like Katie Piper that I could look up to in the media who were out there, sharing their stories whilst being successful and creative. That was fundamental to me, realising that there was hope. The problem, I think, at the moment is that media representation of facial difference is so disproportionately negative.”

Her work with both Changing Faces and Face Equality International has seen her travel the globe

to hear the experiences of those living with facial differences. Recently she returned from India and Nepal where she launched the Stigma Project. The Stigma Project is vital for discovering what the face equality movement looks like in low to middle-income countries. Through the project, Face Equality International will build networks to ensure that they understand the real challenges when accessing equitable healthcare for the facial difference (FD) community.

Phyllida works tirelessly to ensure that the stories of people living with facial differences, from across the whole world, are represented. Only through engaging with communities can the stigma of facial differences be addressed in different societies.

“For centuries, people with facial differences have either been forcibly hidden away, hidden from the media, or we’ve internalised this idea

that we’re not deserving of a place in society. This is why we are proudly saying ‘we will not hide’, to show solidarity with those that are going through that very normal process of feeling that they might want to hide. We will show them there are actually opportunities out there. We want to be seen, we want to be heard, and we deserve to have our faces seen in every aspect of society.”

“To this day, around the world there are children who are hidden away for some or all of their lives. There are children that are banned from attending school because they’re told that they’ll scare the other children. These are real-life stories that are neglected, hidden and not talked about in global society. The FD communities are absent from the public eye and lack representation on the big screen, but also representation in terms

“I think the way that facial differences are represented and having positive normalised role models in the public eye is vital.”

from society that we should remain hidden,

again’ or ‘She’ll never feel confident again with that on her face’. It was that internal kind of dialogue that lit this fire within me to want to prove people wrong and say, ‘I will feel confident and I will feel beautiful’.”

of seeking high-level roles across society. In government, for example, we just don’t see enough people with facial differences performing those high-level roles and having the opportunities that everybody should be afforded. That is why we are coming out with this defined statement. We will not hide.”

It took Phyllida time to accept and learn to love her facial differences. She is determined to change the narrative of acceptance, for society to embrace equality for people with facial differences and for those with facial differences to love themselves.

“We’ve been sold this lie that there is something wrong with a facial difference, that we exist solely to be fixed, whether through plastic surgery, through filters or hiding away. We are hidden in magazines, hidden from advertising, which just perpetuates this idea that we are not deserving of space in society on an equal footing. What we’re trying to say here is that facial difference is not a bad thing. We do not need to be fixed. Our voices deserve to be heard and our faces deserve to be seen. Unfiltered. We are proud to be ourselves.”

A Decade of Daring to Care

Since a decade, EspeRare is embracing the power of research, patient-centricity and collaboration to unlock innovative and responsible drug development in Rare Diseases.

Driven by the belief that everyone deserves the chance to have access to life-changing medical treatments, EspeRare has evolved into a prominent not-for-profit biotech that continues to prove the shared ability to advance therapeutic interventions and create value for the orphan disease community leveraging cutting-edge innovation.

At the core of our collaborative and patient-centered model lies a determination to challenge and redefine conventional drug development pathways, capitalize on pharma know-how and mobilize the philanthropic and public capital to bridge the development gap and develop new therapeutic approaches that address high unmet medical needs in rare diseases.

Through our ground-breaking program in Ectodermal Dysplasia, and the commitment to driving healthcare forward beyond the established boundaries, we currently aim at exploring novel therapeutic interventions in the field of prenatal medicine to correct genetic defects before birth.

As we celebrate our 10th anniversary, we want to express our gratitude to the patients, families, and all our supporters who have been with us every step of the way.

EspeRare Foundation is dedicated to work for and with patients and their families to address pressing and often-neglected needs in rare diseases.

We're looking for partners who share our passion for science and our commitment to patients. Whether you're a researcher, an organisation, a volunteer, or a patient advocate, we welcome your input and collaboration. You can also support our mission by making a donation.

WE WILL NOT HIDE

IN CONVERSATION WITH JONO, CHRISSIE & CATRIN

“I still get nervous, but I will always relax my shoulders. I will smile, I will hold my head high. I will interact with people. I’ll say ‘hey, how you doing?’ and I’ll dress in my own style. I still need breaks and moments to breathe but then I’ll go back out again and I’m able to manage that so much more freely. I’m able to enjoy myself. I don’t feel I need to hide anymore.”

Same but Different are delighted to have worked with Face Equality International to create the photographs and films to support their campaign for Face Equality week 2023. We will not hide will showcase the inspiring stories of individuals living with facial differences and making active changes in society to make facial differences more widely accepted. Each incredible story helps to inform society of the different ways to make people with facial differences feel more acknowledged as we move together towards equality for all.

Same but Different (SbD) was established in 2015 by photographer and marketing consultant Ceridwen Hughes. The inspiration for SbD is Ceridwen’s son, Isaac, who has a rare syndrome called Moebius. From the moment Isaac was born she recognised that people made assumptions about him because of the way he looked and behaved. Having met many parents over the years who felt the same frustrations, she decided to use her skills to raise awareness of the people behind the conditions and counteract prejudice.

Face Equality International (FEI) is an alliance of Non-Governmental Organisations (NGOs), charities and support groups which are working at national, regional and international levels to promote the campaign for ‘face equality’. FEI was formed to mobilise the many groups and organisations, big and small, national and international, which support and represent people with facial differences and disfigurements and thereby create the critical mass and solidarity needed to gain global attention for the campaign for face equality.

As part of this campaign we spoke to Jono, Chrissie and Catrin. They each spoke about their experiences of living with facial differences and the work that they do today to change society’s narrative and make people with facial differences know that they do not need to hide.

Jono Lancaster was born with Treacher-Collins syndrome, a rare genetic disorder which causes facial differences. Although his condition was apparent from birth, his journey living with his difference has not been a linear one, rather it has been a journey full of ups and downs for him. After a happy childhood, with a loving and supportive mum, going to secondary school changed things for Jono. Throughout his teenage years, he was picked on by other children and

he increasingly became more withdrawn as a result. Even a simple thing like a haircut that many of us take for granted, wasn’t an easy thing for him.

“Having a haircut was one of the hardest things that I had to do as a teenager. My mum would always say, ‘Jonathan, your hair’s getting too long, you need to go to the hairdresser. The reason I was scared of going to the hairdressers is because my local hairdresser had one seat in the middle of the salon, all the rest of the seats stood around the outside. You would have to sit in the middle in front of this giant mirror and have your hair cut while everybody else watched. I found it so humiliating.”

Chrissie Reidhofer also experienced bullying as she grew. When she was just 3 years old an accident at the family’s fireplace resulted in her receiving third-degree burns to her face, arms, torso and thighs. Growing up her family and friends simply saw her facial differences as a part of who she was, but as she grew into her teenage years Chrissie started to feel different from her peers. She told us how things changed for her.

“When I got to secondary school the bullying got really bad. I really began to feel like an outsider. I did have a group of friends to who my scars weren’t a problem, but I got a lot of teasing from the other kids. I used to stand in the gym class and know I’d be the last one to get picked.”

At the age of 19, Catrin Pugh was involved in a coach crash resulting in third-degree burns to 96% of her body, after three months in a coma, she awoke to find her life had changed hugely, and she had been thrown into the media spotlight. She had to take time to come to terms with her new differences. Throughout her recovery and right up to today, she always felt that she needed to explain her differences to others.

“I feel like people have made me feel the need to explain myself and my injuries. When you wear a mark or a scar on your skin, and it’s visible for people to see, it’s also hard for people not to be intrigued by it, but it doesn’t make it okay to ask any questions you like.”

The intrusive questions that were directed at Catrin, and at many of those with visible differences, are partly a result of the way

individuals with facial differences are perceived by the public. The media has all to often portrayed those with facial differences as untrustworthy or villainous and this still influences society’s views today. It’s a view that all three shared with us when we spoke. Jono explained “Growing up I would see the latest movies and there would be somebody with a facial difference. He’d be the villain or the bad guy, or he’d be the loser. I could never find a positive role model with a facial difference.”

Whilst recovering in the hospital Catrin felt the same as Chrissie and Jono, finding a lack of positive role models in the media, even the magazines brought to her by friends and family highlighted a lack of people that looked different “I remember flicking through them, and literally, everything was about having perfect skin, looking perfect, being perfect. I would lay there like, ‘Okay, well, I can’t do that’. I couldn’t really see where I could fit in. No one with facial differences was on TV. I just couldn’t find anyone to look to for a while, and I felt really on my own.”

“The accident I went through, the injuries I got, and the life-shattering experience I had, I always say that it changed me for the better. Before I had my accident, I truly didn’t know what I wanted to do with my life. As soon as I woke up from my coma, and realised that I had this injury, I knew that my whole world was going to be facing injustices because I looked different.”

Chrissie expressed herself through contemporary dance as she grew up. She still struggles to find many positive role models with facial differences. “Growing up there were no role models with

facial differences. When I was doing contemporary dance, I was questioning if I could make a career of it because I didn’t see anybody out there that looked like me.”

By refusing to hide they are giving a voice to all those

people that live in society who feel they don’t have one. Catrin told us “I used to wear long-sleeved clothes and completely cover up because I didn’t want to be asked questions and I didn’t feel ready to show the world my scarring. I think feeling like you need to hide that difference is so normal, and it’s not fair, because it’s the way that society has made us feel about how we look.”

Through using her music to get her message across Chrissie is also working to change and challenge society’s opinions. “Whilst playing music, I feel at home. I can be myself. The musicians that I hang out with, I tend to find a lot more understanding and a lot more openminded.”

Jono travels throughout the world telling his story and will tell it in full on 20th July 2023 when his autobiography Not All Heroes Wear Capes is released. Through his work, Jono spreads his message of love far and wide. “It’s freedom just to be able to step out of the dark and say, ‘Hey world, this is me’. That’s true for people with facial differences but also for everybody. I hope and pray that people reach that point because it just allows you to see so much beauty in this world and I wish that for everybody.”

haven’t been able to do this on my own. I’ve had good friends and family around me. I would say to people as long as you’re okay with your visible difference, go out there and don’t be afraid to show it.”

By showing society that there is no need to hide, those with differences can be given a platform to speak and be seen the same as others. Chrissie continues to be heard loud and clear. “I want to live my life. I don’t want to hide anymore. I don’t think anybody should have to hide. If you’ve got something that you want to say or do, then just go out there and do it.” Jono feels that “We all have our unique stamps, on our faces, on our bodies, and our personalities. They need to be celebrated. There is no longer a need to hide.”

Through their hard work, they are individually and collectively changing the way that society accepts those with facial differences, but they all know that there is a lot of work to do. Catrin says “I think that there has been a shift in attitudes towards lots of minorities and people with differences, over the past five years and towards society becoming more accepting. My concern is that unless we keep pushing, there’s not going to be an actual societal change. If we look at any kind of shift in people’s perceptions, and attitudes, towards groups of people, in the past, it takes not just five years or 10 years, but it takes decades to actually make a change. The younger people who are more accepting, as they grow, they have kids, and then that’s where you start having a fully accepting society.”

Read Jono’s full story here

Read Chrissie’s full story here

Read Catrin’s full story here

“I

JACKCARROLL WALKING FUNNY

Photograph courtesy of Independent Talent (c) Andy Hollingworth

After appearing on stage in front of over 1400 people at the age of 12, Jack Carroll went on to be runner-up in Britain’s Got Talent aged just 14. Now 24, he’s currently touring his first solo stand-up show Walking Funny. He was born 11 weeks prematurely and developed cerebral palsy as a result. He spoke to us about how affects him.

“On a purely diagnostic level, cerebral palsy affects my lower half, my legs and my balance. My hands and arms are okay. I get muscle fatigue in my legs and my left foot is a bit dodgy, because of the way I walk it’s turned a little. On a practical level, I have to be careful with the amount of walking I do so I don’t overburden myself, but beyond that, I think I do pretty well.”

Growing up in Yorkshire, Jack felt his physical differences were widely accepted and through the support of family and friends he grew in confidence. This confidence led to him performing stand-up comedy and gaining huge media attention whilst still a teenager.

“I think I’ve always been hugely lucky regarding how people have accepted my cerebral palsy. My mum, dad, siblings, and extended family always imbued confidence in me, so I’ve never really felt different because I don’t do anything different. Due to my great upbringing, my condition has never been a massive issue or a stumbling block.”

Even at a young age, his humour shone through. Being a very funny and approachable child it seemed like an almost natural progression to take his humour on stage. Jack likes to extend his humour into his day-to-day interactions, he makes light of his condition, using it as an icebreaker with new people.

“Using humour is always a good way to disarm people. If people are slightly awkward about things, humour can end up chilling them out. If they see that you’re fine with your condition and can have a laugh it can help people to relax about it themselves. I hope my ability to use humour means that, after a few minutes in my company, people often just forget about the disability.”

Performing since he was a child has taken Jack all across the country. Although accessibility in comedy clubs for performers and audiences alike is generally good in

the UK, Jack does need to consider his disability when venturing out to do gigs.

“With the practicalities of my disability, logistically it does make certain things harder. I have to think about getting into gigs, making sure the venue’s accessible, probably more than my able-bodied counterparts do.”

His cerebral palsy has helped him to write material throughout his career. His light-hearted approach to serious subjects puts his audiences at ease and creates a rapport. By making humour from his condition, he opens up dialogues in society about what can be joked about and by whom.

“From a comedian’s point of view, the condition always gives you something to talk about. That’s a great thing to have as a comic, having a unique selling point. It’s not the only thing that I talk about on stage, but it’s good to have that kind

“The intervention of physio seems to help my left foot to get better. It’s a kind of (no pun intended) balancing act.”

of recognisable characteristic to play with. It is hard being a comedian with a disability, but I think, from the aspect of creating material, it does make things slightly easier in a weird way.”

As an inspirational character for younger comedians, Jack at the age of 24 has a great deal of wisdom to call upon from his long career at such a young age. He believes that any up-and-coming comedians with disabilities have a unique perspective and story that they can use to write material.

“I’m always wary of advising younger comedians because I think my situation starting out was quite unique. I kind of was able to bypass the open mic circuit and stuff like that. Comedy is a good skill and I think particularly interesting if you’ve got a disability or any kind of life experience that deviates from what you would call ‘normal’. Anything other than ‘normal’ is fertile ground for comedy. Everybody has something to say that is interesting, you’ve just got to learn to make those things funny and I think that will be attractive to audiences.”

As Jack grows older, he sees his cerebral palsy changing. His condition has never prevented him from doing what he wants, pursuing his dreams and travelling extensively with his stand-up, as well as being a season ticket holder at his beloved Leeds United.

“In terms of how my cerebral palsy is developing, I have more trouble with my left foot at the minute, I’m having to

watch out a lot more that I’m not giving it as much hammer. I’m going for physio on my foot a couple of times a week. Other than that, it’s much the same but I think eventually it will get progressively worse. The intervention of physio seems to help it to get better. It’s a kind of (no pun intended) balancing act.”

A great number of comedians on the circuit admire Jack’s talent, and as a result, he has made a varied selection of friends throughout his career. He has recently completed support slots with Frankie Boyle and David Walliams described him as “a comedy genius.” Jack’s tour continues into 2023 as his comedy reaches new strengths.

Although stand-up is his great passion, he has also had a long and varied acting career. Acting has seen him portray a variety of roles across various TV platforms, in 2019 he made his big screen debut with his starring role in the film Eaten by Lions. He also has a sitcom pilot that will be released on BBC shortly. One we are sure to enjoy! At the moment Jack is enjoying his tour and all that comes with it.

“I’m still playing dates for my Walking Funny tour this year which I started last November. It’s just me on my own doing an hour of stand up and that is very exciting because it’s my first real solo stand-up tour. It’s been a great learning experience and has been so lovely to see so many people who’ve come out to see me specifically. It makes the tour a little different from when I’m on a mixed bill in a comedy club, it feels like me and the audience have a great connection.”

Jack remains an inspiration for young comedians and especially those with disabilities. His drive to achieve has taken him on an incredible journey. He has achieved a great deal in 24 short years and continues to reach new heights. Why not head over and see Jack on his Walking Funny tour at a venue near you? You certainly won’t be disappointed.

“Using humour is always a good way to disarm people. If people are slightly awkward about things, humour can end up chilling them out.”

Cerebral Palsy

Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture and is the most common motor disability in childhood. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. It is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles.

The symptoms can vary from person to person. A person with severe CP might need to use special equipment to be able to walk or might not be able to walk at all and need lifelong care. A person with mild CP, on the other hand, may walk a little awkwardly, but not need any special help. It does not get worse over time, though the exact symptoms can change over a person’s lifetime.

Everyone with CP has problems with movement and posture. Some also have related conditions such as intellectual disability; seizures; problems with vision, hearing, or speech; changes in the spine (such as scoliosis); or joint problems (such as contractures).

Photograph by Jon Tyson, Unsplash

THE SPACE TO TALK

ENGAGING MEN IN CANCER SUPPORT SERVICES AT MAGGIE’S, MANCHESTER

The first Maggie’s Centre was opened in Edinburgh in 1996, today the charity has a network of centres across the UK and even some abroad. When the founder, Maggie Keswick Jencks, was diagnosed with cancer for a second time she felt strongly that there needed to be new and different ways to offer additional support to those living with cancer. Along with her husband, Charles, Maggie worked tirelessly to bring her idea to life. Together they sought to create a centre that would be a welcoming space, independent of, but adjacent to an NHS treatment centre.

A place where people could talk freely about their emotions and experiences as well as accessing practical support.

We spoke with Robin Muir, the Centre Head at Maggie’s Manchester, about the centre and the services it offers to the local community, focussing on how it seeks to engage with and support men whose lives are affected by cancer.

“What we’ve seen recently is that, partly because of the pandemic, and partly because of how population developments affect staffing

issues within healthcare, the needs of people with cancer have increased dramatically. From the initial diagnosis being delayed to treatment delays, alongside the cost of living crisis, increased isolation and anxiety because of covid the need for support has really increased. The context in which we deliver it has become more complex, people may be a little bit more reluctant to just come through the door, because they’re worried about infections in a way that they weren’t before the pandemic.”

Images courtesy of Maggie’s Centre, Manchester

Reflecting on how men access support Robin is acutely aware, based on his professional observations from his time at Maggie’s, that the centres have always been more readily accessed by women than by men.

“Across our centres, we generally see around a 60/40% split in terms of female/male. What we’re likely to see is that women within the centre are more likely to be seeking psychological support and men might be more likely to be seeking practical support. Whereas women, I think, are happier to be more explicitly talking about their emotions, and their psychological well-being. My feeling is that men often are very fearful about seeking support. That’s probably due to many, many different reasons, from the gender stereotypes that we grow up with through to the continued generational impacts.”

The pandemic also had a noticeable negative impact in terms of men accessing the centre, and although the restrictions have now been removed, it has required a focused effort over the last two years to try to increase engagement with men once again. The team has established that the best way to engage them is to ensure that there is a good range of practical advice as well as support on offer. For example; sessions based around the disease itself as well as financial information whilst working on providing emotional support from there.

Robin reflects that the approach that they had taken previously had assumed that if you offer a service, people will access it easily and appropriately, but that was not necessarily the case. A good example of this is the prostate cancer support group that they have run over the years. At times the sessions would be used by

the men participating to talk largely about very concrete and practical issues around their illness, such as loss of income, benefits, treatment protocols etc. But the team at Maggie’s were acutely aware that there were many things the men were not discussing, for example the very real issues and fears around some of the more personal consequences of prostate cancer such as erectile dysfunction or incontinence.

Gradually this has changed through their focus on carefully building relationships with the men who came along. The conversations may start around the use of hormones and then gently move into the impact of the hormones, the side effects, and the dysfunction. As the group is more established there are long-standing members who are able to be open and honest about their struggles, this in turn

allows newer members to see that this is a safe space in which they can talk if they wish to. A vital insight for the team was to understand that many of the men they supported had not previously had the experience of having the opportunity to be vulnerable before.

“I think that at the heart of it is that a lot of men may not have had experiences of having had trusting adult relationships where emotions are part of these relationships. So, talking about how they feel, the thoughts that they havewith a professional, it’s a very intense thing to do.”

“What you see in those men is actually a kind of discomfort with their own vulnerability, and perhaps that’s not something that they are used to, to feeling vulnerable. Perhaps they have had positions of authority and power within their own lives, and they felt confident within those roles. Or within their family, they might have been the breadwinner, the sort of person in the family that looks after other people. They may never have been ill before and so then to find themselves in a position where they’re feeling vulnerable; physically, socially, occupationally, in many ways it feels more uncomfortable to them. Therefore to come and seek support highlights that to them, it makes them much more aware of that vulnerability.”

Lived experience has also illustrated to the team at Maggie’s that often a group

setting provides an easier way for men to access support initially. Robin explains that the group format offers those attending the chance to be able to be a listener first, which can be helpful if somebody is feeling nervous, or particularly vulnerable. The group space and dynamic enable them to sit back, to listen to other people talk about issues which are relevant to them, to face the others within the circle but not have to look directly at any one person. Whereas in a one-to-one setting, you’d typically sit opposite one another, which can at times not only feel quite intense and uncomfortable but brings with it the possibility of ‘perhaps a feeling of confrontation.’ Instead it is sometimes useful he suggests, to borrow from the advice often given to the parents of teenagers, namely to ‘sit them in the car, that way you don’t look at each other but can both look at something else.’ This can be translated into many shared activities, from walking through to creative processes, which is where art therapy might be utilised for example.

It is important though, Robin notes, to also listen to what a man is telling you through not talking. Whilst there is a really positive and important public narrative at the moment around the fact that men need to talk, that it is ‘OK not to be OK’, and that mental health matters this can at times almost silence the importance of recognising that if we want to understand

what our loved ones are going through, what they are feeling, then we need to allow them to share this in a way that works for them.

“Sometimes what we see in the centre is that people will bring their male loved ones in and say ‘He’s not talking about it.’ There will definitely be an element of that, that the person is not talking about it, but is there also another side to it? Are we really willing to listen to these men? To hear what they are saying by not talking? Because what we’re really talking about is a conversation, and we need two people within that. I think that’s sometimes a hard thing for the people immediately around those men to actually do.”

The social and cultural differences in which boys and girls have typically been treated through their formative years can play a part Robin explains.

“When you look at men, often their social relationships tend to be quite different from women. They tend to have fewer friends and less good-quality contact with people. The statement that ‘men need to talk about their mental health’ probably also raises the question of ‘do they actually have people within their life that they could have those conversations with?’ I don’t know if it’s a minority or a majority, but there would be a lot of men who you might find that they just didn’t have somebody within their life that fit the bill in the same way that a woman might, who might have nurtured relationships and trust over previous important life events.”

Through offering several ways to access support, Maggie’s centres around the country are working hard to reach those in our community, like men, who are traditionally less inclined to seek out support. The best way is to provide a welcoming, supportive, safe and nurturing space where different ways of exploring often difficult subjects will enable a trusting relationship to be built. What might begin as an initial group session, attended perhaps unwillingly, might grow into an important and meaningful interaction, the chance to change the belief that there is no real value in talking.

“We can use a group in a way that allows people to be a participant and then allow them to build confidence to then join in with the group because the group allows informality in a way that perhaps one-toone doesn’t. Although it is important we offer facilitation in the group session I’m very keen within our centre that we do allow or enable a soft ending for the groups. So just because the group has pencilled in to finish at a certain time it doesn’t mean it has to absolutely finish at that point. The counsellor might need to leave because of a prior commitment, but we will often say to people to please ‘stay, take your time, go and get another cup of tea, sit at the kitchen table.’ I think that informality allows people to build trust.”

That is why, at the heart of every Maggie’s you will find a big, welcoming kitchen table.

ABOUT ROBIN CONTACT MAGGIE’S

Robin Muir is the Centre Head at Maggie’s Manchester, having started work there when the centre first opened in 2016 as one of the team’s psychologists. Before training as a clinical psychologist, Robin worked with people living with chronic pain, cardiac diseases and epilepsy, and during the years he spent studying for his doctorate at the University of Liverpool he specialised in working with people with physical health problems. Once qualified he spent several years working in the NHS, primarily within cancer services, before leaving to join Maggie’s when they opened their new centre. In the first few years, he worked on setting up the support programme, before agreeing to step in as the acting head of the centre, a role which was made permanent in November 2020.

Maggie’s Manchester, The Robert Parfett Building, The Christie Hospital NHS Foundation Trust, 15 Kinnaird Road, Manchester, M20 4QL manchester@maggies.org

Maggie’s offers practical, psychological, and emotional support to anyone with cancer and their families. You can walk into any of our centres and get the support you need.

Our expert staff will support you after any cancer diagnosis, through treatment and beyond.

Just come in, you don’t need an appointment and all our support is free. We’re here Monday to Friday, 9am–5pm.

maggies.org

Maggie Keswick Jencks Cancer Caring Centres Trust (Maggie’s) is a registered charity, no. SC024414

team

life together

Image courtesy of Claire McKelvey

Watching your baby boy, still so little, so vulnerable, and who you love with a deeply protective intensity, go through life-changing illness and treatment is incredibly hard. Watching your wife, and the mother now of two of your children, go through her own cancer journey is hard in a new and different way. At that point it almost seems that you have two choices, to allow yourself to feel the fear, the bitterness and the anger that these experiences can bring, or to choose to try to see each day as a new one. A hopeful one, because ‘who really knows what the future holds?’

Neil and Claire were married in the summer of June 2010, a truly beautiful day surrounded by all their loved ones, including Yasmin, Neil’s daughter. When they decided they’d like to start a family it didn’t happen straight away, but in the summer of 2013 their son Max was born. He was, Neil explains, “fine, he was healthy.” When Max was 6 months old they were invited to a wedding, leaving Max with Claire’s parents. On their return Claire’s mum told them that Max wasn’t well, that something ‘was just not right about him.’ When Max heard Claire’s voice he roused a little, but he remained lethargic and sleepy so although they thought he likely just had a bug they took him to out of hours to be checked out‘just to be on the safe side.’

Although two out of hours doctors told them Max was likely only teething, Claire was not convinced, and took him to A&E where he was kept in overnight with suspected gastroenteritis. She had noted that his fontanelle was raised however, and when they were eventually seen by a paediatric consultant he agreed. “I can remember it. I can remember it clear as day. The doctor said I’m just going to do an ultrasound on Max’s head. They did the ultrasound and there was this awkward kind of silence, looking back that’s when he spotted something. The doctor said ‘I don’t want to scare you, but something is there that shouldn’t be there.’ This is when he found the pressure, it was hydrocephalus (excess fluid on the brain) that was causing the pressure but he also found a brain tumour.”

An ambulance blue-lighted Max and Claire straight to Alder Hey, the closest specialist children’s hospital, with Neil following behind in the car. He recalls that in those first few hours they were not given a lot of information, and that although the doctor had advised that it was serious, they didn’t really know what to expect, or what was going on. Once there, the team at Alder Hey confirmed via a CT scan and an MRI that Max had a tumour. They advised that he needed an emergency operation, urgently, and their lives were forever changed.

“It was then that this whole nightmare started, and you know you just never expect it to happen to you, you just don’t think it will. So this whole kind of journey began, and we spent months in hospital, the tumour, the shunt operation, then it

Images courtesy of Claire McKelvey

“We’re a team and I can’t do it without you.”

was the chemotherapy to treat the brain tumour. Looking back you think ‘How did we get through that?’ Max was so small, he wasn’t even a year old, and he was going through that, it was really difficult. Really difficult. I don’t actually know if we could get through that again, what we’ve been through.”

Max was diagnosed with an astrocytoma brain tumour or an optic pathway glioma, and at just seven months old their perfect baby boy was registered as severely visually impaired, a devastating secondary effect of the location of his specific tumour. Over the following years, Max had to have chemotherapy four times, and at three years old he was given permission to try a new treatment that was being studied as part of a clinical trial through Great Ormond Street Hospital, but ‘off trial’, on compassionate grounds.

Today Max is nine years old, he has complex needs, both medically and developmentally, and yet despite the many ongoing challenges he faces he is thriving. The family’s lives are busy, filled with multiple hospital appointments as Max needs regular check-ups, blood tests, ECHO and ECG scans every three months to monitor his heart function, regular courses of chemo drugs, iron infusions, and the list goes on. The tumour itself cannot be removed, and it has left him with lifechanging disabilities. But despite the odds not only can Max walk, he is also busy cane training at his specialist school setting and despite some balance and mobility issues his independence is slowly growing.

Neil too has grown and learnt. Reflecting on those early difficult days He explains that “we all want a healthy child, don’t we? You expect to have a healthy child, but over time we just sort of accepted that Max is always going to be Max, he’s always going to be really complicated, he’s visually impaired, he’s nonverbal. When you have a child of that age and with that diagnosis, I almost think they need to get across to you that their life isn’t going to be normal. It sounds horrible to say it like that, but I understood very early on that Max is always going to be complicated.

Now that’s just the norm, it’s our dayto-day with Max.” Neil feels that the hardest part is learning to understand what has happened, to learn to accept it and that once you do it becomes easier to deal with.

Life moved forwards, and in late 2017 Neil and Claire’s beautiful daughter Ava was born, their family was complete. Family life was hectic, happy but hectic with a younger child as well as Max to care for. Just before Christmas in 2020 when Max was seven and Ava was three Claire was diagnosed with stage 3 breast cancer. “I remember that we were in our bedroom, and I was getting dressed and Claire said ‘oh, by the way, I found a lump, I booked an appointment at the doctors.’ She was not overly concerned about it, but she went to the doctors and they were pretty sure it was just a cyst but they sent her to get it checked out anyway. I remember the day clearly, when I came home Claire was in tears in the hallway. I’ll never forget it. I just knew it was bad.”

The consultant that Claire had seen had told her she would need to see her again, to go over the biopsy results, and advised that she should bring Neil to the appointment, as she was ‘quite

concerned.’ With their experience of the language often used by doctors they both knew this meant it was likely serious, but that still did not lessen the devastating shock they felt when the consultant confirmed their worst fears. “We went into the consultant’s room and she said ‘OK, I’m sorry Claire, you’ve got breast cancer.’ That was literally it. She didn’t try and dress it up or try and soften the blow. It was like, there it is. It just took me back to being sat in a room with Max.” Looking back at that time Neil recalls how strong Claire was, and how positive. That isn’t to say it wasn’t incredibly hard on her because it was, but perhaps because of what she’d already been through with Max, and the very real demands that their family life continued to place on her she seemed to find an inner reserve of strength to draw from.

Max needs a great deal of care, the structure and routine of his everyday life are incredibly important in terms of ensuring he sleeps, is settled and remains as well as possible, so they had to find ways to adapt and cope. Neil took on as much of the childcare as he could to give Claire time to rest and recover after her gruelling treatment, but she’d often try to carry on, telling Neil he should go to work, that she could manage. “I

remember one day coming in and Ava said to me, and I felt terrible about this, I’ve never actually talked about it before, but she said ‘Daddy, Mummy was crying earlier’ and it just killed me. Because I felt like I shouldn’t have been out at work. I’ll never forget those words.”

When he was growing up Neil loved basketball, he played as a Junior for the North West England team and for the Jets. A back injury saw him start to referee, almost by chance, but he was good at it and things progressed. He is now a referee in the British Basketball League (the top league). Neil credits his ability to communicate well with

Photograph by Andy Hu, Unsplash

people as being central to his career development. You have to learn how to stay calm, considered, fair and firm in high-pressure situations, where the stakes and emotions are running high.

Neil also works as a taxi driver, a role he feels has taught him a huge amount not only about communication, but about people, and about life. Although it might not always be easy to do when life gets hard Neil talks to people, he shares his worries, his concerns, and his fears with those he trusts. Not everyone has been able to be there for him, for some the journey they were on with Max was just too hard perhaps, too difficult to bear witness to. “I have a close set of friends, not a huge amount but the guys that are around me are close. I had one friend, who was probably my best mate, where we’re not friends anymore, he struggled with what to say and what to do, and I was a bit disappointed with him.”

But Neil found people he could lean on, one friend, he recalls would always say ‘Tell me all about Max, tell me what’s going on’ and it really helped to know that he cared, and wanted to listen.

Neil and Claire have also had to learn how to navigate their way through this unexpected world of special needs parenting by becoming a team, and by learning to really communicate with one another. Neil remembers how, in the early years of their relationship if they had an argument they might not talk properly for a few days, but after Max’s diagnosis things changed because they had to. “I remember Claire saying that we can’t do this, we’ve got enough on our plates so whatever it is we need to get it sorted out now and crack on. We have to be on the same team, they’re the words that Claire used. ‘We’re a team and I can’t do it without you’.”

But what do you do when your partner, the other half of your team, is the one you need and want to be strong for? Once again, he found comfort and support in talking. Neil recognises that for many men talking might not come easily, or might not feel like it will help, but for him it does. “Probably it’s a bit about personality and maturity, and maybe going through what I’ve gone through with Max has helped. It sort of grounds you, a diagnosis like that, and you definitely look at life differently than maybe you would have.”

“I understood very early on that Max is always going to be complicated. Now that’s just the norm, it’s our day-to-day with Max.”

About Contact

Astrocytoma brain tumour (optic pathway glioma)Children can develop an astrocytoma at any age, and boys and girls are affected equally. The main treatments for astrocytomas are surgery, radiotherapy, chemotherapy and steroids to help reduce swelling in the brain. But whilst surgery is the main treatment sometimes surgery is not possible, this was the case for Max.

Stage 3 breast cancer – Cancer is referred to as being on a scale of stages, there are five stages of breast cancer, starting at zero and going up to four. Stage 3 means that cancer has spread from the breast to lymph nodes close to the breast or to the skin of the breast or to the chest wall. It is also called locally advanced breast cancer.

Visual impairment - Depending on the severity of vision loss people are typically registered as sight impaired (previously “partially sighted”) or severely sight impaired (previously “blind”).

Photograph by Roman Kraft, Unsplash

Sun & fun in the Algarve Stunning Vilamoura

Photograph by Bruno-Martins, Unsplash

THE ALGARVE

The Algarve in southern Portugal is known for its sunny weather, internationally acclaimed golf courses and breathtakingly stunning beaches. A great place for a relaxing break with family, friends or even solo. Our fully accessible guide will help you plan your getaway to the simply stunning town of Vilamoura, famed for having over 3000 hours of sunshine a year. Built around it’s pretty marina, which is the largest in Portugal, this resort town is perfect for everyone with plenty on offer. Get your sunglasses ready, pack your suitcase and jet off, this town will not disappoint!

THINGS TO DO

Parasailing

For the adrenaline junkies out there parasailing in Vilamoura is a must. A fun way to cool down and glide above the sparking waters enjoying the feeling of flying. Fully wheelchair accessible and definitely memorable, the team at Vilamoura Watersports are the best at what they do.

Golf

A round of golf is a highlight for many and the Algarve is the perfect place to head as it has plenty of courses to choose from. In September the golfing world heads to Vilamoura for the European Masters, what more could you need for a perfect round?

Beaches

You cannot come to the Algarve and not see the most beautiful beaches that they have to offer. The Algarve has plenty of them, many of which are accessible with disabled facilities. Praia de Vilamourais is one such beach also offering the use of a tiralô (a free-of-charge tricycle for disabled bathers).

MUST SEE

Benagil Cave, (Algar de Benagil in Portuguese) is a stunning coastal sea cavern. Carved from thousands of years of erosion, this sea cave has two large openings above that flood the cave with light, illuminating the clear waters and sandy beach within. It is believed to be one of the most beautiful grottos in the world. The cave can be reached by boat, kayak or paddle boarding. Tours are a highlight and can be booked with many different tour operators in the Algarve.

WHERE TO STAY

Hilton Vilamoura As Cascatas Golf Resort & Spa

Hotel

This charming boutique hotel offers all you need for a great stay in Vilamoura. The hotel has contemporary designed rooms and is a fantastic place to relax and base yourself. It’s smaller than the other resorts we have listed but that makes for a great personalized stay. The staff are helpful and friendly and will make your visit memorable.

This beautiful hotel is set in 5 acres of landscaped gardens, close to Dom Pedro Pinhal Golf Course. The hotel has the largest spa in Portugal with plenty of treatments to choose from to keep you relaxed. There is also a good selection of restaurants and bars. The Hilton has six pools and also a kids club to keep the mini ones entertained. The rooms are comfortable and welcoming, a great place to rest after a busy or not-sobusy day.

The Tivoli Marina Hotel is a beachfront location that has beautiful rooms overlooking the sea or the marina. It has everything you need for a relaxing stay from its spa to its golf desk to help you plan the perfect round. The helpful staff will also advise and help you plan other activities during your stay, from the best places to eat to the best places to visit. This hotel offers up so much, and is highly recommended.

Vilamoura Garden

Tivoli Marina Vilamoura

Photograph by Ignacio Correia, Unsplash

Retinto Rodizo & Wine

This restaurant offers great tasting food, from it’s Argentinian-style buffet to tapas and local cuisine, there will be something here you will love. Many customers enjoy the allyou-can-eat meat buffets. There are fantastic wines on offer to enjoy alongside the food. The staff at the restaurant are helpful, friendly and will help make your meal here memorable.

WHERE TO EAT

There is no shortage of places to eat in Vilamoura. The marina is framed by bars and restaurants but don’t forget to leave the marina area for some truly tasty places to eat. Every palette is catered for here from international cuisines, to traditional seafood restaurants.

Harvest Kitchen Bar

This great tapas and small plate restaurant will be a highlight of your stay. They offer tasty morsels using locally sourced seasonal ingredients and create mouthwatering plates that are best shared. Nordic chef Anthonio Maimon knows how to create delights and this place needs to be on your visit list while in Vilamoura. It is a hit with locals and tourists alike.

Willies Restaurant

This gem of a restaurant is owned and run by Chef Willie Wurger. A great fine dining venue, Willies is Michelin starred and has been for over 16 years. The food is simply delicious, and a modern international menu is offered and paired with some amazing wines. This place is a highlight of any visit to Vilamoura.

Photograph by Micheile Henderson, Unsplash

RARE tales

Laura joins our Rare Tales alumni Renee and Sarah who took part in the project previously. Telling the stories of beautiful and rare participants Rare Tales is a twist on the classic fairy tales that we all know and love. Laura as Alice, Sarah as Belle and Renee as Little Red Riding Hood. Each brings their own character to life, portraying beauty, resilience and grace.

Dress: Twisted Wunder Janice Heart Dress

£60.00

Sizes 10 to 28

www.simplybe.co.uk

All photographs by Ceridwen Hughes Assistant Claire Li

Makeup Laura Wisinger

“I think the biggest thing I would want someone going through alopecia to know is that there’s no right way or wrong way to deal with hair loss or any kind of visible difference. Yes, if you want to wear a wig, that’s great, but I really wish I didn’t feel like that was my only option.”

Laura Mathias was just 13 when she started losing her hair due to alopecia. As a teenager this affected her greatly and she began to withdraw socially. Laura worried about interacting and answering questions about her sudden change of appearance from her peers.

“I refused to leave the house when I started losing my hair, I wasn’t dealing with it. I didn’t give other people the opportunity to reject me, or get it wrong in how they were going to talk to me about very quickly becoming a bald girl. I didn’t go to school for six months, and that was just from the fear of how people were going to respond to me.”

Through wearing a wig Laura found solace and avoided looking different to other girls her age, but eczema on her head made it uncomfortable to wear.

“I took the decision to shave what was remaining of my hair, which was not much, and get a wig. I felt that was what I needed. If I could look like everyone else, to the best of my ability, with this oversize, very uncomfortable wig, that would allow me to get back to school.”

She continued to wear the wig through university but found it a daunting task to reveal to others that she had alopecia and was bald.

“Being a bald woman, especially when I was wearing a wig, I used to take the approach that it was like a big secret that I had to reveal to friends or potential romantic partners as a trust test. I thought there was the risk that once I told someone that I was bald, they might reject me. Looking back now as a 31-year-old, I am furious with myself to think I would ever put myself in a situation where I would allow someone to reject me.”

As she grew older she began to see more and more inspiring people on social media who lived with differences and embraced them.

“Those role models are the reason that I’m able to sit here and talk to you now without my wig on.”

“The first thing for me to accept my alopecia was reaching out to a community on social media. I needed to see it to imagine I could do it. I found charities like Face Equality International, Changing Faces and Alopecia UK very inspiring. I found individuals just willing to put themselves out there and show that they were happy, healthy and bald. For me, seeing in someone else how beautiful they were, despite their visible differences, made me think ‘Why can’t I see that when I look in the mirror’?”

During the lockdown, and feeling no need to wear a wig every day, Laura decided to work towards embracing her differences. In June 2020 she posted her first selfie without a wig on her social media and was delighted by the positive responses she received from those who lived with alopecia and other differences. This set her on a quest to help others to embrace their uniqueness and be proud of their own appearance.

Through campaigning and highlighting the stories of those living with alopecia

Laura continues to start conversations about what is seen as beautiful in society today. She believes that embracing the stories of those with alopecia and putting them in the public spotlight can help society to accept people’s differences.

“I believe if you’re living in a world where around you, you’re not seeing yourself reflected, you think that you’re different. You think that you’re wrong, and it’s a lonely way to be. So, curating my own social media feed, and choosing to follow people that are actively embracing visible difference has been the trigger for me to start doing it myself. Those role models are the reason that I’m able to sit here and talk to you now without my wig on.”

Despite championing living without a wig, she still feels the pressures of society. She believes that the more accepting society is of people’s differences, the less pressure there will be on those with facial differences to conform to old stereotypes.

“There are still days were walking out of my front door without a wig on feels like climbing a mountain. That might not make sense to lots of people who see me on social media posting bald selfies, but social media is a different thing, it feels safer. For me, social media is behind a lens, and I’m in control of my image. It’s walking down the high street in my small town that can feel overwhelmingly scary some days.”

Through public speaking and social media, Laura continues to inspire individuals and champion those living with alopecia. Her message of loving your differences and finding the beauty in yourself is much cherished by those with alopecia and is beginning to be listened to by society. She continues to be an inspiration and will continue to give voice

to those who feel that society has muted them.

“The key thing I would want people to think about is that it takes so much energy to hide who you are, or a key aspect of who you are, like a visible difference. It takes emotional energy, it takes physical energy. Life becomes so much easier when you just embrace who you are.”

“There’s no right way or wrong way to deal with hair loss or any kind of visible difference.”

Little RED Riding Hood

Turning the tales of childhood on their head to reflect a rare interpretation. Renée has been diagnosed with Ehlers-Danlos Syndrome and never knows how she will feel from one day to the next. As a strong and confident young woman she realises the ‘wolf’ is not always as scary as she thinks!

Dress: Petite structured twill midi cami dress £95.20

www.coastfashion.com

Beauty & the BEAST

Sarah had her leg amputated due to osteosarcoma at 16. She has learned to live with her disability and is confident and embracing life’s opportunities.

We all know social media can be cruel and in our interpretation the ‘Beast’ is social media.

Dress: Sequin cross front maxi dress £111.20

www.coastfashion.com

SUMMER HAPPINESS

Enjoying the longer days

Summer is a perfect time to get outdoors, grab your friends and family, light the BBQ and enjoy the company and the food!

Try a new water sport like paddle boarding or kayaking. A perfect way to cool down if the heat gets too much.

Take an evening stroll along your favourite walk, smell the air as it cools and listen to the evening birdsong.

Head to the coast, maybe a nice sandy beach. Kick off your shoes, feel the cool sand between your toes and enjoy an ice cream or beach comb the shoreline to see what treasures you can find.

Summer is the perfect time for fresh tasty seasonal foods, think Mediterranean flavours. Head to your local market and stock up before making a great-tasting meal.

Photograph by Benjamin-Elliott, Unsplash

Photograph by Mgg Vitchakorn, Unsplash

Get your friends together and organise a trip to a local comedy club.

Stargazing is a must over the summer. There are 7 meteor showers this year, so grab a blanket, head out and make a wish on the shooting stars.

Create your summer playlist, music can help our moods so immerse yourself in the melodies.

Pack a picnic and spend a lazy afternoon sitting under a tree, enjoying some tasty food and the peaceful surroundings.

Look for local fitness classes outdoors. Many offer early morning or evening classes when the heat has eased.

Make yourself a fresh fruit salad for your breakfast and embrace the vitamin boost.

Try something new. From an art class to a skydive. Now is the perfect time to do something for you.

We know not every summer day is warm and dry so enjoy the rain. Head out and splash about in the puddles or enjoy thunderstorm watching from your window.

Summer is the perfect time to head to a festival. There are so many to choose from, from music to food. Go with friends, or try a family friendly one and take the children.

Photograph by Aranxa Esteve, Unsplash

Photograph by Dominik Pearce, Unsplash

Take some time out to practice mindfulness for an hour. Meditation, grateful lists, jigsaw puzzles or colouring are perfect to turn off your thoughts and be in the moment.

Camping in the summer is perfect. There is a camping option for everyone, from wild camping in a remote area to purpose-built glamping sites, enjoy the experience. If you don’t want to venture too far from your home comforts create a camp in your garden!

Watch the sky! Perfectly blue skies with white fluffy clouds are a fantastic opportunity to relax and use your imagination, lie back and watch – what will you see?

Head out to the woods or local forest, it’s cooler to explore on a hot day. Take in the sounds and smells around you.

Book yourself in for a pamper. A great massage can do wonders to help you relax, or try some reflexology.

Head out to an outdoor cinema. Lots pop up over the summer months so watch a film outside but take a blanket in case it gets chilly.

Photograph by Pauline Bernfeld, Unsplash

Photograph by Jona, Unsplash

Photography by Ceridwen Hughes

WHY SHOULD HE CHANGE?

Eric is a young man that lives with a rare condition. He has a terminal deletion on 4to34.3 as well as a double duplication of 16p13.2. His mum Alison explained that as far as they are aware he is the only recorded person with this specific deletion and genetic profile. Alongside this Eric has multiple diagnoses. His mum Alison says “He has autism, dyspraxia and dyslexia. He has auditory processing disorder. He has sensory disorders as well as social, emotional, and mental health issues, but despite all of that he’s just absolutely fantastic. I mean, he is just a dream boy.”

Eric was diagnosed quite late, he was 10 when the family got the final diagnosis, even though the family had pushed for more tests from infancy. He was first seen by a paediatrician when he was 3. His mum had difficulties describing Eric’s issues in front of him at the appointments. “I’d written down things, and I’d say at the start that I can’t really discuss these issues with Eric sitting in the same room. It’s all the negatives you start talking about again.

The doctor said that she saw none of the issues I was describing. It was a battle and I kept pushing, eventually, we got Eric’s first diagnosis which was his dyspraxia. I had to keep battling for more answers as I knew

Eric’s health wasn’t down to just dyspraxia. I started asking about autism and about how to get Eric tested but I was told ‘no’. I even have one professional letter saying ‘Mother is terribly anxious and wants labels for her child.’ Nobody wants labels for their child, you just want to get to the bottom of what the issue is.”

Eventually, Eric went onto a waiting list for genetics and he finally received a diagnosis in January 2015. The family then had a private diagnosis for his dyslexia. His health has improved as he has grown. “He was hospitalized quite a lot as a baby and a toddler with his breathing, so we had a lot of respiratory issues. He also had quite a lot of bowel issues but health-wise today we’re incredibly lucky, the only medication he takes is for issues with dermatology on his face and arms now.”

For Eric, he suffers from high anxiety and routines are needed as he is very structured. Explaining to him the plan for the day and telling him that, for instance, a delay may happen or an unplanned outcome might occur helps him prepare for the day. “You never ever say to Eric that we’ll do something in ‘two minutes’ or say ‘give me a minute’ as he will take it literally and count down the minute.”

“He is very determined. His path may have been a bit longer maybe than everybody else’s, for example, he had to redo a year for his GCSEs to achieve his marks. His big dream was to do A-level history so he did classics as well as regular history. He just loves history. I mean, he shocked and surprised us all with his GCSE results so he is now doing his A-Level history, which just makes me so proud. It just shows that he knows

that things might not be on the same time scale as his peers but he’ll get there and achieve what he wants. He said that he would love to go back to the school, the mainstream school, that told him he couldn’t do his stats because he was not intelligent enough, and he would love to show his results to them.”

Support for the family comes from friends, CRDN and the Unique Feet group. “He is part of Unique Feet, which is absolutely fabulous. There, people just accept

everybody’s very different and everything is accommodated as much as it can be. He loves that.”

The future for Eric is unknown and he will soon be 18. This leaves the family with more issues. “That means unless we get a power of attorney or deputyship (he doesn’t really need deputyship) I wouldn’t be able to speak on his behalf at meetings. He will have to fill in all the forms for PIP and ECHP himself. I don’t understand why

they suddenly think a child with multiple difficulties suddenly can do it all by himself. It’s quite ridiculous.”

The fact that Eric’s case is so rare means there is no benchmark to set him against, there is no way of knowing how things will be. This can be difficult to also get across to professionals whether it be healthcare, schooling, or social services. “Especially when there’s little or no information you don’t know how to describe it. So being asked, for example, what it will lead to in the future is something that can’t be answered. You’re trying to find out and telling people there’s no information about the possibilities for Eric. I can’t tell you what is going to happen, what the possibilities are or what the limitations are.” It’s a constant struggle for them. Alison has fought long and hard for Eric and his diagnosis plus getting things put in place that will help him in life. It has been a constant battle.

“He is part of Unique Feet, which is absolutely fabulous. There, people just accept everybody’s very different and everything is accommodated as much as it can be. He loves that.”

Today’s society is not the most inclusive or unjudgmental unfortunately and this is a constant worry for most parents today, however, as a parent of a child with additional needs, it can be more so. Eric has his dreams and ideas, and his family will always support him in what he chooses to do. “At the moment, he’s saying that he’d quite like to go to university, but he doesn’t know how he would cope living by himself. We do hope that in the future he will be able to live independently. It’s difficult because in the future he does want to work but he just doesn’t know what that may entail, yet!”

Eric is happy to go to college (he has a wonderful key-worker), and enjoys many hobbies. He adores history and loves to read and learn about it. When the family go on holiday, they choose places that Eric loves to learn about and he will research and plan what they could do together on their trip. He loves his music and has an eclectic taste in what he is listening to. Then there is skiing. Eric loves it and the family go to Milton Keynes every week so Eric can ski there. “We were incredibly shocked about Eric and skiing, but he took to it and is good at it. Because of the level of dyspraxia he has, you know, he can’t run in kickball, he runs and he trips. It was a huge surprise how good he was at skiing.”

“I don’t want Eric to have to change, I hate the fact that people say ‘well if you did this, he would fit more into society’. I think society should encompass my son, and people like my son, it shouldn’t all be a one way system of Eric learning to fit in. You know, he has always accepted who he is and he’s always just wanted to move forward. I suppose he doesn’t know what the future is going to be. But he accepts it and I think not wanting to change yourself as a young person, one that’s got difficulties too, is amazing. I think it shows quite a lot of strength of character. He thinks ‘okay, I know, things aren’t easy for me, but where can I get to next?’ I hate the fact that some children like Eric have to go through the struggle, but he accepts his struggle and makes the best of it. I think it’s just the fact of acceptance for him ‘I’ve got this and I’ve got to get on with it’. I am so proud of him.”

Unique Feet brings together kids and families who understand each other’s shared challenges and difficulties but who also know how important it is to celebrate their achievements.

Often that understanding enables the UF ‘gang’ to raise one another up to help achieve hopes and dreams that might be so much more difficult to achieve alone.

To find out more about Unique Feet and how they can support you, click here

Read the Impact Report and hear from families about what this community means to them here

“Eric is happy to go to college (he has a wonderful key-worker), and enjoys many hobbies. He adores history and loves to read and learn about it.”

Katja Revisiting

The Rare Aware project was launched by Same but Different to encourage people to look beyond rare conditions, to see the person for themselves and to gain an insight into the daily lives of those living with rare diseases and disabilities. Over the years we’ve been grateful to to have some truly amazing individuals take part to help us raise awareness of their rare conditions.

We had the privilege of meeting Katja a few years ago, a beautiful, vibrant young lady who had already achieved so much in her life.

“Katja is a kind and loving girl who absolutely adores music and can always be heard singing around the house. She is an avid reader and spends a lot of time writing short stories herself. She has an infectious warmth and happiness about her and loves being around her family and friends”.

Katja was born with Moebius Syndrome, a rare congenital disease which causes paralysis in some of the cranial nerves; especially those that control the muscles of the face, eyes and ears.

This means that Katja is unable to smile, frown or blink and has some difficulties with her hearing. She is also unable to move her eyes from left to right, which affects her coordination and balance, and she suffers from muscle weakness causing scoliosis of the spine.

This does not, however, stop her from always trying her best at things - she recently gained her green belt in Karate and her Grade 2 Piano.

“Although she faces, and has faced, many challenges and prejudices in her life, Katja does not let this hold her back.

Those that take the time to look past her exterior will know that she is quietly strong and determined, and handles things with admirable dignity and without complaint (most of the time!)”.

Her family are extremely proud of her and the things that she has already achieved for herself.

“Katja is a quietly strong and determined young woman.”

Photography by Ceridwen Hughes

Moebius Syndrome

Moebius syndrome is a rare neurological disorder characterized by weakness or paralysis (palsy) of multiple cranial nerves, most often the 6th (abducens) and 7th (facial) nerves. Other cranial nerves are sometimes affected. The disorder is present at birth (congenital). If the 7th nerve is involved, the individual with Moebius syndrome is unable to smile, frown, pucker the lips, raise the eyebrows, or close the eyelids. If the 6th nerve is affected, the eye cannot turn outward past the midline. Other abnormalities include underdevelopment of the pectoral muscles and defects of the limbs. Moebius syndrome is not progressive. The exact cause is unknown. It appears to occur randomly (sporadically) in most cases; however, some cases occur in families suggesting that there may be a genetic component.

To learn more about Moebius Syndrome, click here

The Moebius Syndrome Foundation are a US based foundation whose mission is:

‘To provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions’.

To find out more about how the Moebius Syndrome Foundation can support you or your family, click here

What we’re into

PODCAST REVIEW

Diffability, a Dadsnet original podcast

“You are not alone in your journey”

Raising children with a DIFFABILITY is a Dadsnet original podcast, hosted by Paul and Michael Atwal-Brice who are the adoptive parents to two sets of identical twins, Levi and Lucas, and Lance and Lotan. The older boys, Levi and Lucas, both live with autism and epilepsy, as well as other complex needs, and over the years Paul and Michael have built up extensive experience in raising children with a Diffability. The aim of their podcast series is simple, to ensure that others on this journey know that, no matter how hard things are, you’re not alone.

The first season was launched in March 2022, with the second season following in February 2023. The episodes not only follow the lives of the Atwal-Brice family, but also include some brilliant guests as well as lots of useful hints and tips. What truly sets this podcast apart through is the sheer relatability and warmth of the two hosts, Paul and Michael, who are funny, engaging, and always down to earth. Definitely well worth a listen – and a follow!

BOOK REVIEW

TENDER, The Imperfect Art of Caring by Penny Wincer, published by Coronet, (Hodder & Stoughton Ltd)

“Joy is available to us in so many surprising ways and sometimes a complete rethink about how we access it can allow us more than we imagined possible.”

Before becoming a carer, first to her own mother and now as a single parent to her autistic son, Penny Wincer graduated from the University of Melbourne with a degree in film and creative writing. Despite not writing for many years this book is truly that of a writer, simple, beautiful and powerful. Although we often don’t give much thought to what it means to care for someone else we are all likely to do so at some point, be that for your parent, a child or a partner. It is

currently estimated that over 10 million people in the UK are caring for a loved one* and yet it is not an experience that is widely talked about, or planned for, and certainly not recognised for what it is. Caring can be hard, and in this beautiful book Penny combines her own personal experiences as a carer with the lived experiences of others. This serves to offer not only some very honest and real insights but also some useful tools for navigating situations that many of us are either facing or may well face in the future. We so often think we have a plan for our life, an idea of who we are, and what we want to do, or hope to do in the future, but becoming a carer to a loved one often forces us not only to change our plans, but to also reevaluate what matters. Life might not look the same, and it may well be edged with complicated shades of sorrow, fear, loneliness or regret but as the quote above describes so perfectly, if we can learn to embrace our complicated lives, to rethink what happiness and joy might look like, we can find new ways to thrive.

* Taken from the Carers UK research in 2022 which estimated that the number of unpaid carers could be as high as 10.6 millionCarers UK, Carers Week 2022 research report.

FILM REVIEW

An Irish Goodbye directed by Tom Berkeley and Ross White

This beautiful and heartwarming short film is currently available to watch on BBC iPlayer, and is scheduled to be available for the next 10 months. The film, which was written, produced and directed by Tom Berkeley and Ross White stars James Martin and Seamus O’Hara. It has won both an Oscar and a Bafta in the 2023 award season.

The story is set against the backdrop of a working farm in rural Northern Ireland, where Lorcan (Martin) lives and works with his mum until her death. His older brother, Turlough (O’Hara), having returned for the funeral, is also determined to carry out the plans made by the family to sell the farm, and to help Lorcan move across the country to live with his aunt who has agreed to care for him. Plans which were, we must assume, previously agreed. It would be overly simplistic to assume that this story is based on Lorcan having Down Syndrome, because although part of the storyline is based on him having a learning disability, the heart of the story focusses on the two brothers, and their grief. Lorcan is unhappy about the decisions that have been made about the support he will need after the death of his mum, but he also finds it hard living without her, and wants to remember her life before he is forced to leave his home, the home they shared together. The film is about how he mourns his mum’s passing, about how he convinces his brother to help celebrate her life in an unexpected way, and about how sharing these experiences reunites the brothers in their grief, but also in joy and in the possibility of an unexpected and shared new future. It’s such a lovely film, I watched it twice!

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IF THE WORLD SAW WHAT WE SEE

Contributed by Annie Dewhurst

Once upon a time, I was told that I wouldn’t wish that my daughter didn’t have her disabilities, as then “she wouldn’t be Hannah”. This was early along in my SEND parenting journey and that unexpected and unsolicited comment really threw me. I wasn’t quite sure how to respond. Even now I think well really, where do I even start with that one? But now I’d try to reply I think and I’ll try here.

My initial riposte would, I hope, be better now, for a start. I’d query what knowledge they possessed which led them to make that assumption.

Then I’d probably go on to educate and advise that I love my daughter unconditionally, but wouldn’t want her to have all the challenges she has, or for her to be in pain. I wouldn’t want her to have difficulty expressing her wishes and needs. I wouldn’t want her to self-harm or harm me. I wouldn’t want her to be confused and anxious about the world around her and, quite simply, just like many other parents, I wouldn’t want her to experience all the negative things, and people, that she does.

So would I want to change HER?

Absolutely not! Would I want all those challenges not to be there?

ABSOLUTELY, yes!

Would she still be Hannah? Yes, of course, but without all the things she faces day in and day out. Without all the things that hurt my heart every time I see her struggling. More importantly, without all the stuff that hurts her.

There are a select, wonderful few individuals who share a similar adoration of her. There are also a handful of people who share a similar awareness to mine of her strengths and needs. They see her for who she is – a glorious individual in her own right. They see how she grasps life and gives it a good shake.

But there are others who see only what they want to see. I’ve been relieved at times that she’s not been aware of how people have acted around her. For instance:

The man, sniggering along with his wife and daughter (I’m guessing here, they looked related) at Hannah’s verbal stimming whilst we were sat in a motorway café. The man didn’t give me eye contact, so the wife copped for my death stare. I’ve developed a rather magnificent one over the years!

The children pointing and laughing as we walk by loudly declaring ‘Look! That big girl was in a pram’.

The woman who literally (I kid you not!) put her face IN Hannah’s pram just to get a better gawp. I won’t share what Hannah’s father’s response was, just know that it comprised of some rather *coughs* colourful language.

Or the wide-eyed parents, clutching their poppets as we walk by as if we’re contagious. On these occasions I am SO tempted to either;

(a) get within reach and let Hannah touch said family with her deadly diseased hands (probably not deadly actually, but she has a penchant for sticking a finger or two up her nose, so…)

(b) purchase a cowbell, hang it around my neck and loudly declare “UNCLEAN, UNCLEAN. MAKE WAY FOR THE UNCLEAN” as we pass by. (This may actually be apt at times, as I do often venture out without checking my appearance after my child has pawed me at mealtimes, always a messy affair, I must say!)

What do people see? Why can’t they see Hannah the way we can? Instead, we’ve learnt to joke about the silver linings. For example, we are VERY good at clearing a public playground. Every cloud and all that.

Maybe they hear her before they see her and don’t want to see her…because they don’t wish to acknowledge that there are people, equally as entitled to be out and about, who are different to them.

Maybe they’re fearful or uncomfortable. I’ll never know unless I ask them. But to be honest, I’m too long in the tooth these days to be bothered about whether anyone is feeling awkward. Not my circus, not my monkey.

However, there are people who see more. Those special few that we’ve met over the years; wonderful people, who aren’t afraid of looking and giving a genuine smile or striking up a conversation. When they talk TO Hannah, it makes me want to hug them, mostly I’ve refrained as that could get a bit awkward mind you.

Maybe they too walk a similar path. I must admit, when spotting a fellow SEND

parent, I am tempted to do some kind of gesture in ‘Team SEND’ solidarity, like that three-fingered salute Jennifer Lawrence does in The Hunger Games or something. I haven’t though.

Perhaps they’ve met disabled people before or worked with them. Perhaps they have people close to them who have additional challenges. Perhaps they have disabilities or faced adversity.

Maybe others just see a kid in a bigger than ‘normal’ (whatever normal is) buggy.

Maybe, they see a young lady, having some help whilst going about her business. What do I wish the world could see? It’s simple really. Our children, our loved ones, for who they are. In an ideal world, it’d be nice if adults were educated about disability so they could then educate their children. Maybe that’s too much of a big ask though. “What breeds will out” as an old colleague of mine used to say.

And then there are the many and varied professionals we’ve come across over the years. Some do genuinely see her, I know that. Others see a diagnosis or something to be fixed. I guess that’s a tale to tell another time.

What I am sure of is that people don’t (can’t) see the challenges she (and I) have faced throughout her life.

They haven’t seen the tears, the utterly crushing blows, the challenges, the sleepless nights, the fear. Perhaps they’d think before sniggering. But, maybe not.

Nor have they had the honour of seeing how she faces life head-on and embraces it; despite what life and her disabilities throw her way. Nor do they know that she accepts people just the way they are. And that’s a shame. Because they could learn a lot from her.

I know I have.

Annie:

Annie writes a brilliant blog on Facebook, which is full of her candid and often humorous insights to their world. You can find her by searching for ‘My kid loves broccoli.’

She has also written, and co-written books, we’ve included the details below:

Cornelia de Lange Syndrome – A Shared Journey:

The (little) Book of Broccoli:

Hannah:

Hannah was diagnosed with Cornelia de Lange Syndrome whilst still a baby. CdLS affects between 1 in 10,000 to 30,000 live births and is present at birth. Individuals may display physical, intellectual and behavioural characteristics. However, it can be widely variable and not all people with the condition will show all of the aspects.

For more information visit www.cdlsworld.org which can signpost to the different Foundations.

If based in the UK you can find out more at www.cdls.org.uk

The first International consensus statementtreatment and diagnosis protocol can be viewed here:

View

5 Questions with

Michael & Paul Atwal-Brice

Proud parents & passionate advocates for #adoption #samesexfamilies #disability

Find out more

Please share a little background about your rare journey with us: We are the proud parents to two sets of identical twin boys, Levi and Lucas who are 17 years old, and Lance and Lotan who are 5 years old. We started out by being foster parents, before agreeing to adopt Levi and Lucas when they were 2 years old. Although we knew that they were a little delayed we thought they would just catch up once they were in a loving home. Once we began to realise the full extent of their needs we were already strongly attached, they were our boys, but it was really hard and we were thrown in at the deep end really. When they were 3 years old they were both given a diagnosis of severe autism. About 6 months later they started having seizures. We will never forget the paramedic saying to use “I’ve got a funny feeling that we’re going to see in a lot more of these boys’ Dads.” Today the boys have multiple different diagnoses beyond their autism and complex epilepsy, including speech and learning difficulties, global developmental delay and mobility issues.

What does a typical day in the Atwal-Brice household look like?

BUSY! We often say we really need our own PA to help keep on top of everything. We have a diary that everything gets written in, all the different appointments, things we need to do, lists etc., and sometimes we say to each other on a Sunday that we don’t dare look beyond the Monday! Initially, just Paul stopped

Images courtesy of Michael & Paul Atwal-Brice

working but eventually we realised we both needed to be at home to manage. Our days are always a juggle, starting bright and early with breakfast, medications and just generally getting everybody up and out to two different schools in the morning! We have some PA’s who come in to help and that’s vital to allow us to spend time with the younger boys because Levi and Lucas can’t be left unattended. Of course, if one of the boys needs hospitalising after a huge seizure it’s all hands on deck! So, we must have to be super organised and prepared for anything.

If you could offer any advice to other families on their own rare journeys what would it be?

We are lucky that we have each other, we always say how hard it must be to be a single parent to a child or children with complex needs because they must be exhausted. We feel passionately that families should be given more support at home, the support that they need to be able to care for and support their children at home, so they don’t have to go into care. We both hate it when people say our boys are lucky because they have two parents who can and will advocate for them because they shouldn’t have to be lucky to get what they need. So, we try and use our platform to help. Our advice would be to find organisations that can help you if it all gets to be too much!

What do you both do that is for yourself?

For years we didn’t really do much for ourselves, but we try to do more now, sometimes just simple things like looking around a garden centre, or just catching up on some sleep really helps!

We both love to be in the garden; planting, cutting the grass, or painting the fence making it look nice for the summer. We have a little sensory garden for the kids, which is planted with different herbs for the boys to smell, and flowers with bright colours so they can see what can grow in the garden. We have a few fruit trees too, the boys love picking an apple at harvest time.

We also really, really enjoy going to gigs, from Billy Ocean to Christina Aguilera! Paul was a professional dancer and we love a good boogie. We’re also proud ambassadors of some charities, Caudwell Children and AFK (Action for Kids), working to support and raise awareness of disabilities. We both really enjoy helping out with lots of charity events, supporting and attending fundraisers feels like a great way of giving something back to us.

What is your favourite family memory?

Our favourite family memory has to be our family trip to Walt Disney World in Orlando. Levi and Lucas have been a few times before and it’s their favourite place! They love theme park rides and all things Disney. Last year’s trip was Lotan and Lance’s first trip abroad and it was so special to see all four of our boys having the time of their lives, especially after how difficult covid was for them all.

Levi and Lucas are so much happier and come to life in Disney, it’s just wonderful. They tend to have far fewer seizures as well, when we spoke to the neurologist they said it may be because there is so much more activity in their brains that it leaves less room for seizures… if only we could live in Disney forever!

Rare Navigator

Help when you need it

At Same but Different, we strive to make a positive difference to the lives of those affected by rare diseases. Through our Rare Navigator service, we offer emotional and practical support and information to individuals, their families and all involved in their care, from the point of diagnosis and beyond.

Our individualised support and advocacy service aims to ensure that each family is able to access the level of support they require to meet their needs. Our team can help you to access beneficial services and equipment, and can provide helpful information, tools and resources that encourage understanding of rare diseases and how it may affect your family.

We work closely with national and local health and social care providers to ensure that our families are informed and have access to optimum care, treatment and services that can assist daily life and increase opportunities for independence and social interaction.

For more information, please contact us on enquiries@samebutdifferentcic.org.uk or call 01352 757007

Our support area of North Wales will be expanded for the time-being and if we can't help you, we will put you in touch with our colleagues in disease specific support organisations. Katy Parry has a personal and professional understanding of the complexities and difficulties that families face and can support you in navigating your way through your rare disease journey. Some of the ways she supports families include:

•Home visits (whenever necessary)

•Supporting families to understand the choices of care that may be available

•Helping families to access their local healthcare services

•Liaising with local health and social care teams, which may include your Occupational Therapist, Speech and Language Therapist or Social Worker

•Working with schools and teaching staff to provide information to support children in attending and achieving at school

•Accompanying individuals and families to clinic appointments or meetings.

ACCESSIBLE TRAVEL

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FASHION

www.coastfashion.com

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IF ONLY THE WORLD SAW WHAT WE SEE

www.cdls.org.uk

JACK CARROLL - WALKING FUNNY

www.jackcarroll.co.uk

www.cerebralpalsy.org.uk

MAKING THE MOST OF SUMMER

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Supported by:

RARE TALES

www.simplybe.co.uk

www.ehlers-danlos.org

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www.lauracranetrust.org

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www.changingfaces.org.uk

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REVISITNG KATJA

www.moebiussyndrome.org

THE SPACE TO TALKENGAGING MEN IN CANCER SUPPORT SERVICES

www.maggies.org

WE’RE A TEAM

www.aheadofthegamefoundation.com

www.indeerosetrust.org

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www.clairehouse.org.uk

WE WILL NOT HIDE

www.faceequalityinternational.org

www.catrinpugh.com

www.katiepiperfoundation.org.uk

www.changingfaces.org.uk

WHAT WE’RE INTO

www.pennywincerwrites.com

www.bbc.co.uk/iplayer/episode/ m001k2z5/an-irish-goodbye

www.podcasts.apple.com/gb/ podcast/diffability/id1616031899

WHY SHOULD HE CHANGE?

www.camraredisease.org/ uniquefeet

5 QUESTIONS WITH www.afkcharity.org

www.caudwellchildren.com

www.atwalbricefamily.co.uk

www.samebutdifferentcic.org.uk/raritylife

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