withinReach Winter 2018
Helping children with upper limb differences live life without limits
What a great idea to raise the profile of Reach and show the
40th Anniversary Family Weekend Focus on surgery Disability politics Our very own Reach World Champion
Ability of our members!
Rico Byrne's football team, Doyle FC in East Belfast, will be wearing this kit every week at their matches for the rest of the season. They have teams from under 6 up to under 16. Rico, 4th from left, has been playing in his team for two years with friends and kids from his local community. They were struggling for a sponsor to pay for their kits until dad Carl said: " I'll buy their kits if I can put the Reach logo on them. The club was delighted!" They look fab! Thank you, Carl!
The Official Magazine of the Association for Children with Upper Limb Difference
withinReach Please send photographs and stories for withinReach to Jane Garrett, addressed to:
Comments, articles, requests, ideas:
The Editor, withinReach, 2 Farmside Cottages, Hound House Road, Shere, Guildford, Surrey GU5 9JG or via email to: firstname.lastname@example.org
Tel: 01483 203237 Mobile: 07884 268594
Inside Issue 139 pp
Sue Stokes Award: Harry Pepper
Reach Family Weekend
Politics and Dr Marie Tidball
Focus on Hand Surgery
Born Incredible - our new babies
Pushing those boundaries
Thank you for fundraising
Branch and Members' News
We welcome comments, articles, requests or suggestions for future editions of Within Reach.
Any letters for publication should include the name and address of the sender, but these can be withheld from publication if requested.
Within Reach has a print run of 1,600 and is distributed to members, subscribers, health services and specialists. If you need to reach this key audience, we would be delighted to consider including your advertisement. Contact Jane Garrett on 01483 203237 The views expressed in this journal are not necessarily those of Reach and are not intended to reflect or constitute Reach policy, or in any way portray an official view.
Membership of Reach is open to parents of children with upper limb difference and other individuals of 18 years and over who are interested in furthering the work of the association. Junior membership is given to children who have an upper limb difference. The UK subscription is from ÂŁ36. (ÂŁ35 if paid by direct debit) You will receive three issues of the magazine a year by post or email if you live overseas.
This covers any member aged between 2 and 85 years of age resident in the UK with a congenital difference of one upper or lower limb or both upper limbs or who have had one upper or lower limb or both upper limbs or one hand amputated. There is a slight difference in cover for under 16s and those not in paid employment at the time of their accident. Please call Head Office for more details about the schedule of insurance.
SHARED EXPERIENCES National Co-ordinator: Kevin Griffin Reach, Tavistock Enterprise Hub, Pearl Assurance House, Brook Street, Tavistock, PL19 0BN Tel: 0845 130 6225 From a Mobile: 020 3478 0100 Email: email@example.com Office hours: Monday-Friday 9am-4pm website: www.reach.org.uk Follow us on twitter: @reachcharity Facebook: www.facebook.com/reachcharity Registered charity no. 1134544 withinReach magazine is printed and distributed by NRG Marketing, 209 Aldwick Road, Bognor Regis PO21 3QG
This book, published by Reach, is extremely useful for families who have discovered they have, or are about to have, a Reach baby. Shared Experiences is a collection of accounts by Reach families of their own real life experiences of having a child with an upper limb difference. Their stories are shocking, saddening, funny, inspiring and captivating. All in all, a brilliant realisation of life with an upper limb difference. Contact HO to order your copy. It is also via the website.
THE LINK TO YOUR LOCAL REACH COMMUNITY This is such an important role, bringing families together for support and shared fun and we have vacancies in the EAST MIDLANDS and SOUTH WEST. Please give it a go. You donâ&#x20AC;&#x2122;t need to do it alone! Volunteer with a friend. HO will give lots of support. Call us on 0845 130 6225, or from a mobile: 020 3478 0100.
WELCOME TO OUR WINTER ISSUE WELCOME TO KEVIN, NEW NATIONAL COORDINATOR " I am writing this just as we approach the end of British Summer Time and as I finish my fourth week with Reach. I can only describe this period of time as incredibly eventful while others I have met have described it as my ‘baptism of fire.’ I arrived at the beginning of October with all sights set on the Family Weekend, I was to learn very quickly the importance of this event in the Reach calendar. The office in Tavistock becomes a cauldron of activity, white boards becoming quickly full of actions to be completed, phones busy with last minute bookings and enquires from the many who will be performing over the weekend wanting clarity of times and what we want them to do. Three weeks pass very quickly and before I know it I’m heading up the M5 to Bristol for the big weekend. There are so many people behind the scenes giving their time generously to ensure things run smoothly from Trustees briefing on Friday night to dedicated teams of volunteers co-ordinating and running activities for children to a well drilled team behind the scenes preparing for the Gala Dinner. Too many of you who have been here before may already know all of this, but to us first timers, and I know there were quite a few of us at the weekend, it's certainly worth a moment to stand back and applaud these magnificent efforts. I want to say a very big thank you to everyone who participated in this year’s event and that includes all of the families and members who travelled from far and wide to make it such a success. Moving on, there is still a lot to do post weekend including preparing the feedback questionnaire. Over the coming weeks we will reflect on your comments and ensure their inclusion makes the next one in October 2019 even better!
Now I know a lot of you could not make the weekend but I do hope over the coming months that there will be opportunities to meet the wider Reach Family. Since we introduced the new post of Volunteer Development Officer, we are looking to build on the discussions that Keely had with some of our Branch Co-ordinators and to find ways of meeting more of you. After all, the coverage across UK and Ireland is tremendous so we will do our best to use our limited resources wisely and ensure our lines of communication and support remain consistent and transparent. A bit about me: My whole working life has been dedicated to the voluntary sector supporting a broad range of communities, who for one reason or another need to make sure their voices are being heard and that they are getting an equal share of life’s opportunities. My last job was working with adults with learning and physical disabilities where our mindset was always on the can do and if you don’t first succeed you know what to do next, and it wasn’t give up. My focus has always been to encourage people to develop their life skills so whatever they choose to do they have the confidence and presence to follow through. That’s me done!. I look forward to meeting you and catching up on the amazing things you do on a daily basis. I would like to think these future encounters will shape what I write in the next edition. Meanwhile, enjoy all the festivities that Winter has to offer. Kevin Griffin We love helping our young members to live life to the full! Reach Bursaries are available to help support a Reach child to fulfil their potential in any way, through sport, music, mobility or adventure. Typically they are awarded to members to help pay for expensive items like car adaptations, to enable them to learn to drive. Bursaries have also been given to help pay for sports training including paraclimbing and snow-boarding, musical instruments and more. Would your child benefit from that bit extra? Apply now. Our Bursary Panel is keen to help out. If you need help applying just contact head office.
Abby Cowlan passed her driving test first time: "Thank you so much to Reach for the bursary allowing her to be taught and take her test in her own car. We were also extremely lucky to find a fantastic teacher willing to teach her in her own car and who has been inspired to get an adapted car himself to teach young adults with a disability."
CHAIRMAN’S REPORT October saw our annual family weekend and AGM in Bristol. The event is always my favourite in the Reach calendar for many reasons; inspiring speakers, informative and innovative exhibitors and a chance to let our hair down in the evening at the gala dinner. Most importantly, it is a wonderful opportunity for our members to network, share experiences and build relationships; nothing I could write quite captures the spirit of the event. This year was particularly exciting as we celebrated 40 years of Reach, a fantastic achievement for such a small organisation and one well worth celebrating; which we did in typical Reach style. Both the conference during the day and the gala dinner were exceptionally well attended, reflecting our ever-increasing membership base and proof that after 40 years, Reach is more relevant than ever. I want to say a big thank you to the Reach team that makes the family weekend possible. A lot of work goes into making the weekend run smoothly and professionally and we do it all inhouse. This would simply not be possible without our staff and volunteers who should be proud at what we achieve. Celebrating 40 years of Reach has been an opportunity to look back and reflect, and also focus on the needs of our members going forward. Reach has been through quite a lot of change in the last few years. The membership continues to grow, we re-branded, created a new website and have begun investing into an increasing number of events across the country. All good stuff but as we continue to invest in events and services, we need to make sure Reach is in the right shape to deliver. Our trustee board strategy weekend takes place before the end of the year. The focus will be on aligning our new look and larger head office team, not only to support our members but to continue raising our profile and identify fundraising opportunities to financially support the costs of increased events and services. The objective is to continue making Reach the unique and inspiring charity it has always been. Here's to the next 40 years!
Reach Board Lee Gwilliam Chairman 2 Middle Barn Cottages Hampstead Norreys Berkshire RG18 0SQ Tel : 07971 170922 email: firstname.lastname@example.org
Chris Fuoco 20 Cornlands Sampford Peverell Tiverton Devon EX16 7UA Tel: 07771612414 email: email@example.com
Kevin Moyes Vice Chairman 12 Lady Housty Newton Swansea, SA3 4TS Tel: 07834353877 email: firstname.lastname@example.org
Ruth Lester OBE 18 Church Road, Edgbaston, Birmingham B15 3TA Tel: 07747 867460 email: email@example.com
Phil Robertson Treasurer 126 Ash Lodge Drive Ash, Hampshire GU12 6NR Tel: 07973 363014 email: firstname.lastname@example.org Gary Phillips 2 Walden Cottages, Westwood Lane, Normandy, Guildford, GU3 2JB Tel: 07984 045575 email: email@example.com Siân Brooks 15 Paullet, Sampford Peverell, Nr Tiverton, Devon Tel: 01884 820223 email: firstname.lastname@example.org Julie Detheridge 20 Brunswick Road Earlsdon, Coventry, CVI1 3EX Tel: 02476 251185 email: email@example.com
THE SUE STOKES AWARD 2018 GOES TO HARRY Dom Hannett said “He is a fantastic ambassador for Reach and has really done Reach proud this last year. Firstly he went to the head teacher of his school and requested that the school adopt Reach as its chosen charity. He presented an assembly and he was so fantastic and eloquent that last September he took part in promotional publicity work for Reach for the Global Make Some Noise campaign. Sometimes he had to get up at 4.30am to get up to London for interviews. He read a news bulletin and was utterly exhausted but he did everything that the Global team asked him to. It was overwhelming but he did it very well and held his own. The Heart Radio breakfast programme even offered him a mentoring opportunity. Harry said: “Reach has been the best thing in my life. Every year I have always looked forward to the Reach weekend and it has just really helped me.”
Ed Pearce 9 Fraser Close, Laindon Basildon, Essex SS15 6SU Tel: 07772 543949 email: firstname.lastname@example.org Elizabeth Wilmshurst 94 Victoria Mount, Horsforth, Leeds, LS18 4PZ Tel: 07852 371075. email: email@example.com Clare Salters 6 Norroy Road, London SW15 1PH Tel: 07767 272272 email: firstname.lastname@example.org
A BIG WELCOME TO NEW MEMBERS
A forest of hands went up when conference delegates were asked by compĂ¨re Alastair Greener if this was their first ever Family Weekend. What a brilliant introduction to Reach as it celebrated its ruby anniversary at the Bristol Marriott! Reach aims to provide joined-up support for all family members, focussing not just on emotional support for parents or information about surgical options but also acknowledging Reach children's varied attitudes towards their limb difference, their different ideas about prosthetics and their psychological needs as they learn to accept their bodies. At the heart of this is the bringing together of families and Reach children. Peer group support, the relief of being with other children with similar limb difference, make the Family Weekend a very powerful experience for all generations.
A combination of excellent entertainment and childcare for tinies and activities for older children, a really varied and interesting exhibition covering all kinds of research and showcasing a wide range of the latest prostheses, and a superb line-up of speakers with spot-on relevance to Reach families made the day extra special. Add to that the glitz of a birthday ball brilliantly organised by Sian Brooks.
Put next year's dates in your diary now! October 18-20, 2019.
REACH FAMILY WEEKEND THE CHANGING WORLD OF PROSTHETICS The exhibition showed just what an exciting time this is with rapid advances in the technology and design of prostheses. Opcare, Ottobock and Steeper demonstrated their ranges of cosmetic, functional and myoelectric prostheses. Open Bionics showed its 3D printed multi-grip bionic Hero Arm. Team Unlimbited and Enable UK displayed its range of free 3D printed functional hands while newcomer on the scene, Mitt Wearables is taking a different path, with its simple lightweight socket with interchangeable tools.
NHS Centre for Enablement
Team Unlim bited
Mitt Wearables began as a university project. Nate Macabuag and Sergi Fayos have just graduated from Imperial College, and with Alex Trimm, a graduate from Oxford Brookes, they have launched a company to tackle key issues that they had heard about from people using prosthetic limbs. Nate's university project involved him working with a quadruple amputee and his solution is quite different from other prostheses. "We have designed a new type of prosthetic arm," explained Nate. "A Mitt arm has a soft, comfortable socket that can be adjusted like a shoe; and it has a range of simple, interchangeable hands Mitt Wearables designed for specific tasks. The Reach stall "It’s a lot more comfortable, flexible and is self-fitted. It comes with a range of tools which are exchangeable. There are no myoelectric sensors but we believe simplicity is best. There are no moving parts, it is easy to use and people are really happy with them. So far we have 10 people using them and another 10 signed up and more coming, and we hope to start selling them soon. They will be completely affordable - £100s not £1,000s. "We’re in the final stages of development and are continually adding different hand attachments. Everything we do is built on user feedback, so we are keen for children, adults and everyone in between to try out our prototype and help us make it even better.
REACH FAMILY WEEKEND THE HERO ARM
The pride on Cameron's face as he shook hands with Alex Brooker with his Hero Arm was brilliant to see. He was one of the first children to receive the Open Bionics arm and having it has made a big difference to his self esteem. Joel Gibbard and the Bristol-based Open Bionics team launched the Hero Arm, the world’s first medically approved 3D-printed bionic arm, in April this year, but it is currently only available privately. The good news is that Joel reckons that the arm will be available on the NHS within the next year. Still a way to go, but the end is in sight. Meanwhile, his message is "Don't be put off by the cost" if you want one, as there are other ways of funding it.
“This time last year – wow! It has been been such a leap forward," he said. "We haven’t really stopped to reflect. At that point we were doing our pilot study, and we continued with a development contract with the NHS and we have a new clinical study coming up. We launched the new Hero Arm which uses bionic technology to the private market. The really cool thing is that it is produced with 3D printing which makes it the most affordable hand on the market. We are unique in that we manufacture the whole prosthesis ourselves. It is custom made and bespoke to each individual. "The main change is the number of people getting involved in this technology. There were three companies and now there are a dozen spread across all kinds of different countries. This means more choice and having that competition drives prices down. It means that technology improves at a faster rate. One of the things we wanted to do was to try to change the perception of people towards prostheses. We wanted it to be more of a fashion accessory. After all it is a cool piece of technology! I can’t put a date on its availability through the NHS but we expect to be offering it which the next 12 months. “The youngest user is nine years old but that was probably a bit too early. 11 or 12 is better but it depends on the child and is not necessarily a question of age. The cost if you buy one privately is around £10,000. We have been working with donations as well and working on setting up a charity of our own to help fund children who need a Hero Arm, so please don’t let the cost put you off. Joel has won multiple awards for his work and was recently named alongside co-founder Samantha Payne as the 2018 Hottest Start up Founders in Europe, at the Europa Awards for changing people’s lives with futuristic prosthetics.
FROM BIONIC ARMS TO A BRAIN WITH SUPERPOWERS! The brain is an extraordinary powerhouse that absolutely fascinates Dr. Tamar Makin, associate professor at UCL's Institute of Cognitive Neuroscience. What happens to the part of the brain that activates a hand that is not there? Can the brain reprogramme itself to give precision control to other parts of the body? Tamar is on the case. As the head of the brain plasticity lab at UCL, Dr. Makin's research combines tools from neuroimaging, experimental psychology and rehabilitation to study the brain plasticity of body representation. Specifically, she is focussing on the brain's ability to change in individuals with traumatic or congenital hand loss. Her research enables clinicians to guide individuals that have experienced hand loss to take advantage of the benefits of brain reorganisation, rather than to suffer from the adverse effects. Speaking at the Family Weekend was Tamar’s first experience of explaining the wiring of the brain to a lay audience but she succeeded with the help of very clear interactive slides! Seeing how each finger is connected to a separate part of the brain was amazing. And her work on how the brain reconfigures itself to cope with another limb, such as a foot, being used as a hand substitute is very exciting. “Different parts of the body are represented in different areas in the brain,” she explained. “Surgeons noticed that if they stimulated parts of the brain it elicited movements in different parts of the body. There is a map of the body inside the brain and we can pinpoint exactly which bit operates a hand. Changes in the brain can give phantom pain but when a limb is lost, can we use this massive piece of unused brain to give us superpowers? “People who were born without hands have very developed areas in the brain related to their feet but no matter which limb is used in place of a hand, the brain area for the hand is still being engaged, so the hand area might be an area people could take advantage of when using basic hand functions. What about prosthetic hands? The more you use a prosthetic hand the more your brain recognises it as a real hand. So not only other body parts but also prosthetics can colonise the hand area in the brain.”
DIFFERENCE IS NOT JUST A PHYSICAL THING... Prof Diana Harcourt is Director of the Centre for Appearance Research (CAR) at the University of the West of England, Bristol. For the past 20 years her research interests have focussed on people’s experiences of an altered appearance or visible difference, and how psychosocial support and interventions could help those who are affected, and also their families. She had some good advice for Reach families: concentrate on the positives- what your child can do - their achievements rather than their looks. “We give support for people who have a visible difference. We use our research to promote positive reactions. So we find out: is there a problem? Who is affected and why? And we work with health professionals, schools and businesses. It’s a topic that is very popular with the media and I work with politicians and do lots of work with organisations that support people. We want to promote good experiences and positive attitudes. “We can’t switch appearance off, and some people are interested in it. Everybody’s appearance is different and we should celebrate that difference. You also cannot make assumptions about how people think about their own appearance, but the reactions of other people can lead to a feeling of loss of anonymity, stigmatism and discrimination. It can have a negative psychosocial impact generating anxiety or even anger and aggression. “Being concerned that people are going to judge you negatively can also lead to people avoiding situations and becoming isolated. Some people are bothered by difference while many other people can thrive. Research showed that half of adults reported levels of anxiety, a quarter had worrying levels of depressive feelings and two thirds were worried about social situations. “But if you flip the statistics around, this means that half were not anxious. What makes the difference are psychological factors, such as our identity and the extent to which individuals valued appearance. “Being focussed on appearance is very negative compared to having a balanced outlook, but people need the support of their family and friends, focussing on what they can achieve and do. People who invest less in appearance do really well. They focus on what bodies can do, rather than how they look. “There are points in people’s lives that can be particularly challenging: changing schools, looking for a job, and some people need a lot of help. We want each individual person to have a toolbox of things to help them, for example having information about their difference and being able to explain it to people; having access to fantastic prostheses and access
to peer group support; training to enhance social skills or cognitive behavioural techniques. “To change perceptions you could start with a general population campaign such as Strictly, the Last Leg, or the Great British Bake Off, which are all changing public views around difference. “We have created the Appearance Game for schools and this game changes children’s attitudes. YP Face It is a seven week online programme of support developed by the Centre for Appearance Research (CAR) at the University of the West of England, for young people aged 12-17 who are struggling to manage the consequences of having an appearance that they, or other people, consider unusual or different. "Go to www.ypfaceit.co.uk which has videos, quizzes and an audio facility which young people can access in their own homes. There is also the Dove Self Esteem project which provides schools with materials and projects to help young people learn to accept their bodies.”
...BUT YOUR BODY MIGHT STILL NEED SOME HELP This was Sue Kent's second Family Weekend and the Swedish and Sport Massage therapist held an open workshop advising Reach families on how to avoid physical problems caused by having a limb difference. Sue demonstrated helpful stretch routines to keep people with upper limb difference balanced, injury free and pain-free. And she showed how self-massage can help. Reach members could try this out using her self-massage equipment and techniques. “Over the years we have done a lot of work and research on where we go wrong when we have accidents and what happens if we do things differently from other people and put excessive strain on our bodies over time." she said. “I look at common muscular problems and RSI, at posture and the effect of your difference on your body. For example using your mouth as a third hand can have an effect on your hearing, eyesight and neck and down your arm. One self help option is self massage. We will never use our bodies symmetrically but by attending to taut muscles it will prevent chronic pain and loss of movement.”
REACH FAMILY WEEKEND It's natural for Reach parents to worry about how their children will cope with a limb difference. That is why it is so important for families to come to the annual family weekend and see older children and young adults leading full lives playing sport, playing music and living life to the full.
"Being part of Reach when I grew up with a limb difference meant I wasn’t isolated and that’s very important. From a musician’s perspective a person’s mental health and well being is very important for expressing yourself, and having Reach as a back-up helps you express yourself properly.
Matthew Phillips, Aaron Samuel and Alex Brooker were this year's line up of inspirational people.
“I play left handed and looking at some of the OHMI instruments they have absolutely blown my mind!"
I wanted to prove people wrong who thought I couldn’t play.
Aaron, 21,is a professional musician/songwriter and has been a member of Reach for over 10 years. Since graduating this summer with First Class Honours in Commercial Music at Bath Spa University, Aaron has also set up A&H Music Workshops to try and showcase the crafts of song writing and live performance. He held workshops at the Family Weekend, demonstrating how to play guitar and talking about the importance of music making. “I got into music when I was around 15 when I did my first live gig. I got into it through youtube. I self taught myself the guitar but I was part of a church choir so I was trained vocally and I thought I should add piano and then guitar. "I have fond memories of a Reach outing to Wales. What I love about Reach is that I come from a rural village where there was no-one like me and then I come to a Reach event and suddenly there are more people like me. It’s great to realise you are part of an entire community."
I remember one school music report saying I needed to use more fingers on the piano!
ONE HANDED RECORDERS Did you know? Reach Head Office has a supply of onehanded recorders for hire. If you have been notified by your school that recorder lessons are coming up, GET IN TOUCH! Your child should not miss out on the recorder. It could be the start of an amazing musical journey!
MATTHEW PHILLIPS, WORLD CHAMPION!
Matthew aged 17 is a great Reach role model, transformed from a shy competitive swimmer to a confident competition winner and an articulate and inspirational public speaker. And 2018 has been quite a year! The youngest member of the GB Paraclimbing Team he put in a flawless performance at the World Climbing Championships to become the new World Champion and has a medal tally of 5 Golds and 2 Silvers. “It was obviously a surreal experience and something I might never get again," he said, "But it was a community thing as my climbing friend came second. They held the award ceremony in the market plaza in Innsbruck and it was an amazing experience. “You can start climbing at any age. It’s about giving it a go. There is no expectation of you being the best in the world. Even if you don’t develop into a competitive climber it’s still a fun work-out. “Climbing has its element of danger but it is minimised. It’s a safe sport to begin. In the international competitions we have got people who just climb with one hand or a palm. It doesn’t matter what your difference is. “I was a swimmer before but it was a very boring sport and I was looking for a new sport. I went to a couple of climbing parties and then went along to a paraclimbing session and came second. I’ve had a lot of support from Reach over the years. I’ve come to AGMs and done a talk and Reach has also helped me financially with grants. It’s been great. "My favourite climb is at Kangaroo Point in Brisbane but I also like Portland and the Peak District. I use medical tape to protect my little arm. I wrap it up well to make sure it’s safe. It was a case of trial and error to find the best way of protecting it. I would recommend anyone to have a go at climbing. The best way to start is to join a club. It will help you make friends.”
Sport and Adventure in Bristol
REACH FAMILY WEEKEND ALEX BROOKER
Alex Brooker pushes boundaries to bring disability into the public eye in a positive way through comedy as a journalist and television presenter but for Reach families, it was his ability to bare his soul about his own disability that struck home and left few dry-eyed at the conference. He is best known as co-presenter of the award-winning The Last Leg which won an RTS Award for Best Entertainment Show. He also fronted Scope’s End the Awkward, a national campaign which uses comedy to shine a light on the awkwardness that many people feel about disability. The video reached 1.5 million people on YouTube alone. “I’ve ended up being one of Britain’s top disabled,” said Alex, “But when I was growing up, my parents were worried about what sort of school I would go to. Luckily my dad wanted me to go into mainstream schooling and that was one of the best decisions. "I was the only disabled kid. They panicked! The first day at secondary school the first lesson was swimming and I was so excited! The teacher took me to one side and put me in a kayak and I thought Oh My Goodness they do canoeing! Then they gave me armbands and no oar and there were no other canoes in the pool. My canoe just drifted round in circles. My friend had to tell the teacher I could swim and then I was chucked in the deep end.
“My school life was good and I knew what I wanted to do: I wanted to be a football journalist from the age of 11 and so I concentrated on English but I didn’t finish a single exam. I never said anything about it and then I was offered a laptop! My grades suddenly went from D to A and I was investigated for cheating! In the end I didn’t It means a make it as a journalist because I was just lazy and I started looking for other jobs and lot to me to saw a Paralympian open day advertised where you be here to could try out sports. I got into the GB rifle shooting development squad but the one thing I had never talk to Reach done was spend time with disabled people and the parents and impact was devastating. I became very self-conscious and it led to the break up of a relationship kids. and I quit the team. I just didn’t want to be among disabled people. I left in the middle of a competition and went into counselling, confronting issues about my disability that had never encountered before.
“Then came a Channel 4 advert for presenters for the Paralympics and they trained me. I covered blind football and cerebral palsy football and was given a nine-day contract. I was asked to interview Boris Johnson at the opening ceremony and then had to interview the Prime Minister David Cameron and after that I was asked to go on the Last Leg. “My disability used to be the elephant in the room and I have grown about my disability through doing the Last Leg and going to the Olympics. I could never imagine being confident about being disabled when I was young. Now I have children and I recognise what my parents must have gone through. Not everyone can be a Paralympian but it is about making your own way through life and not putting your mistakes down to your disabilities. If I could go back and tell myself that then I wouldn’t have lived the life I have."
Retired Consultant Plastic Surgeon and Reach trustee Ruth Lester has set up an informal national network of consultants who have an interest in Children’s Hand Surgery. “I have been a plastic surgeon for 30 years and I was privileged to look after children with upper limb difference and I now act as a link between my colleagues and members of Reach. I know the NHS is getting nearer to providing a service that has dedicated children’s clinics with people who understand better through having been brought together. "This is a time of surgical advances, bionic advances and developments in prosthetics but it is about making sure that the services we offer are relevant and in the right place. “Being a trustee of Reach is fabulous. I have known about Reach and the support it gives to the people in my clinics but being part of the organisation is fabulous because normally I only see the surgery and that is one very small part in a child’s life. But the decision making is very difficult and you have to decide when they are very little because surgery works better when they are very little. “I have enjoyed watching your children grow up. After surgery you have a little bit of adjustment then the children just run with it. I love these weekends watching the children running around and doing crazy things.
ISAAC HARVEY If you were at the Family Weekend, you will have noticed the most amazing welcoming smile. It was on the face of a severely disabled young man but what you noticed, was the warmth of that open welcoming smile. Isaac is a communicator par excellence and what he communicates is that he is a person first, not a disabled person. So WR asked him to write about perception of disability. "Perception is one of those things where it is easy to explain but hard to understand, as perception is different for everyone. You go outside, you look up and if it is not a sunny day. Most of us will see clouds, but some see faces, animals and more. If you are the one seeing something apart from just clouds, when you try to explain this to friends or family, not everyone can see it as we all perceive things differently. ‘You look at me. I have no arms. I look at you, you have no charms…’ a quote from a video I made called ‘Unconscious Bias’. Perception can be somewhat explained as having unconscious bias as we all have it, we just don’t know it’s happening. "I was born with short legs and no arms so from day one I have perceived life differently to someone who does not have a limb difference. As I am unable to perceive myself I decided to ask a few friends who know me, two questions. When you met me for the first time, what were your initial thoughts? Here are some of their answes. ‘This boy is an example of determination!’ ‘I wondered how you’d do things’ ‘First time I met you I was greeted with a warm smile, a ‘hey man’ which was settling, as given your challenges I was not sure how to interact…’ ‘A shy little boy who was looking forward to going to Lourdes’ ‘I clearly remember noticing your big smile and shiny keen eyes.’ ‘Wheelchair came third I think, and only because I had to run after it.’ ‘…was too shy to talk to you for the three years I saw you…’ ‘I was nervous as I didn’t know you…’ ‘Seeing you for the first time was quite startling…’ How is it different now, has anything changed the way you thought initially? I asked this is because initial thoughts and perception can sometimes change once you know a person or take a second glance. ‘God help me to move on, no excuses ...’ ‘…how you edit your videos is incredible!’ ‘…your get-on-with-it attitude and don’t-mess-around ethic, meant I was at ease when really it should have been me setting you at ease.’ ‘Never judge on first appearance’ ‘…I admire you for your can-do attitude. It's one of the best I have come across’ ‘outgoing and adventurous’ ‘…I didn't know why I was so worried, we made each other laugh and I felt humbled to hear a little about who you are and what life is like for you…’
‘I’m not nervous or afraid to speak to you or ask you anything now.’ ‘When I see you now, I just see my friend and often forget you even have a disability.’ "By this you can see there are many different perspectives as a lot of people see me differently. Some may surprise you, some even surprised me after reading them as I will be honest - initially I thought I was going to get at least get one negative one which was going to turn out positively, however again I thought differently to actually what happened. I must have really good family and friends, haha. I do thank them daily for accepting me for who I am. "Society has definitely become more accepting of disability within the past few years and I'm not saying that it is perfect because it is not. I go out almost every day and get stared at pretty much all the time and I wonder what they must be thinking. Then after a while you realise overall it is just curiosity. "One typical question I get when people do end up talking to me is, ‘how do you drive your chair?’ as I drive my wheelchair with my feet and at a quick glance you cannot see this. So no wonder they are staring at me as it looks like I am controlling it with my mind! "My name is Isaac Harvey, I am a vlogger, adventurer and somebody who does not let my disability stop me from doing anything. So next time you see a person or look at a cloud in the sky just know that you are not seeing the full picture and if you are that picture, realise that your difference makes you who you are and you are unique. "Before I finish here, parents - a little note from me. Ever since day one my mum has always encouraged me to do things in life (even if it means jumping out of a plane) and from that it has helped me soar into who I am today letting myself do amazing things here and there. It has allowed my perception to be forward thinking and just achieving. I really want that to be something that you help your child with as otherwise their perception on the world will always been in the dark so yes please worry about your children but also know that they need to learn and achieve as much as I have, maybe even more!"
DRIVING TIPS Vicky Garrett and Paul Farrell from the Driving and Mobility Centre (West of England) brought examples of two options for one handed drivers and had lots of interest from Reach members. Their advice: “If the limb is too short to reach the indicator control, you may have to have an indicator pad, but some people like to use their little arm to operate the indicator. Everyone needs an assessment but if they can operate the indicator with their little arm, then they just need a steering wheel knob and it does not have to be coded on their licence and you can get one yourself from Halfords. "But anything with indicator controls incorporated into it will cost £1,000 or so as it needs to be hotwired into the car. Technology is changing fast. Lights now come on automatically, and windscreen wipers too, which will make life easier for Reach members. The main thing is to get an assessment before you buy anything.”
REACH FAMILY WEEKEND FROM BRAZIL TO REACH Fernanda De Franceschi told WR: "We moved to England in 2014 when Bernardo was three. We came because when he was born, we went to a big hospital and they told us that they couldn’t do anything for him. We were told we didn’t need anything. "I wanted more and I was struggling as I knew he would need help so my husband started looking online, at technology and prosthetics, and we saw that Europe was the place. We decided we wanted to give Bernardo the best possible opportunities. At He’s just that point there was the possibility like me! I’m of my husband working in the UK. He is a civil engineer, so we decided not the only we would come to give the best for Bernardo. one!
“When we went to the British GP for a regular check to say we were here, we were referred to St Mary’s Hospital and they told us about Reach and said it was amazing. They were right. It is amazing. "That time was hard for Bernardo. He missed his friends but we went to the first Reach meeting with Nicola Romberg in 2016 and didn’t tell Bernardo where we were going. When we got there and he saw another Reach boy he started running round like crazy saying “He’s just like me! I’m not the only one!” He was overwhelmed and couldn’t stop running around and I had never seen Bernardo that way before. "Things are now going so well. Bernardo is so much loved but for the first two years he was bullied. We knew there was something wrong but he wouldn’t say, so we took him to a psychiatrist at St George’s and at his first session he said he was glad he’d come as he “felt pain in his heart” and he started to talk. He felt we were sad about his arm and I felt heartbroken. He had been making such an effort to show that things were fine. That was life changing. "The hospital contacted the school to talk about bullying problems and gave them one week to sort it out. Neither I nor the school knew what was happening but it was good because the school was prepared to do whatever they could to help Bernardo. It started a campaign. Every month This is the they held an assembly on the theme of All Equal, All Different and had an best day of anti-bullying campaign. Bernardo started a my life campaign so everyone is aware of how to treat people and it helped them talk about their feelings. Bernardo loves school now and I see a different boy. When he came to the Family Weekend he said: “This is the best day of my life.” I have never seen my son so happy. He doesn’t have to explain anything to anyone.
"Here in England we have this bonus of support that we didn’t know existed. We were amazed. I rang Reach and cried and talked about my hopes and fears and when I hung up I knew I didn’t need to worry and feel afraid. "When we go back to Brazil, Reach will be my inspiration. There are very poor people there who don’t know where to look for help or how to talk about it. There is no-one to support them so maybe in the future I can help."
LIFE ON THE OCEAN WAVE Leah Hardcastle voyaged from Poole Quay to Southampton on Tall Ship STS Lord Nelson with the Jubilee Sailing Trust. "What an opportunity!" she said. "I was so excited but a bit worried and really was not too sure what to expect. I find that meeting new people in a new social situation a bit daunting. I needn’t have worried. "My ship, 'Nelly' for short, is beautiful. I arrived at Poole Quay with my dad and my granddad (who adores Tall Ships) and I was invited onto the ship and left my family merrily snapping away and put my bags into my cabin. I was introduced to other people on the boat and generally took my bearings. "The weather was beautiful but unfortunately there was no wind. Eventually we had to make headway using engine power. I learned the layout of the ship, the different names given to the different parts of the ship ie. fore, aft etc. I became involved with life on the ship, working with others, cleaning, maintaining and generally learning about all the ship’s needs and its equipment. " I was even allowed to take the helm. The movement on the ship takes some getting used to (sea legs) but that is all part of the experience. We all had our own timetables which included a night watch. My night watch started at 2am until 4am which involved navigating around other ships and objects through the use of sonar equipment etc. and this was really exciting as it was totally dark outside the ship. "I would like to thank Cookie (the cook) for the amazing food she provided as my group had the best timing for mess duty before we set sail! I made some fantastic friends and will keep in touch with them all. I even remember the commands given on deck, such as ‘26 heave’ and ‘sweating’. I remember struggling with the ropes and sweating them to angle the sails. The crew were extremely supportive and helped every day with my confidence. I even managed to climb up the rigging which I never thought I would be able to do but with help from everyone, I achieved it. "I would like to say a massive thank you to REACH and the Jubilee Sailing Trust for this trip, as I have grown in confidence, gained lifelong friendships and have experienced life at sea! "I would recommend anyone to give this a go, it is fabulous."
NEED TO KNOW POLITICAL REPRESENTATION FOR DISABLED PEOPLE In this year as we celebrate a century of women having the right to vote, former child Reach member, Dr Marie Tidball, talks about the need to increase the representation of people with disabilities in politics. "This November marks 100 years since The Parliament (Qualification of Women) Act 1918 gave women over 21 the right to stand for election as a Member of Parliament. I am, therefore, delighted to have been asked to write about the representation of disabled people in politics and my own political experiences. "I am a former child member of Reach. I was born with foreshortened arms and legs, with a digit on each hand. My dad, John Tidball, was one of the first people to run the London Marathon for Reach in 1989, when I was four-and-a-half years old. Later, in my teens, Reach covered my experiences growing up with a disability in a booklet, Through the Keyhole. I am now founding director and Coordinator of the Oxford University Disability Law and Policy Project. My academic interests include adult social care, mental health law and the treatment of people with disabilities in the criminal justice system. Prior to my academic career I worked for Autism West Midlands, the Labour Party, and as a broadcast journalist for Channel 4 News. These roles have given me the opportunity to work on award-winning campaigns aimed at driving disability inclusion. "But it is increasing the inclusion and representation of people with disabilities in politics that has become a particular passion of mine. Working to achieve this is something I have been able to do as an Oxford City Councillor. As City Executive Board Member for Supporting Local Communities, I instigated an Access Audit of our beautiful Town Hall and asked our Council to look at housing provision for people with disabilities. I also established our Oxford Labour Disability Network, providing training and workshops for our members. Three people in our Network with a disability were selected, to fight the 2018 Oxford City Council elections earlier this year. Our work has been used as an example of good practice and I hope our Party makes a national roll-out of this scheme. "So why does increasing the representation of people with disabilities in politics matter so much to me? "There are 13 million people in the UK with a disability and disabled people make up over 20% of the voting age population. However, the House of Commons is left with only 1% of Members of Parliament with a disability. Since 2010, austerity policies have decimated services and opportunities for disabled people. In order for national and local government to reflect the needs and aspirations of people with disabilities our voices must be heard. That’s why more politics needs to be done by disabled people. Who is better to tell the government what services, education, rights, jobs, housing and childcare we need than us? Our lived experience matters enormously in influencing the government’s law-making. This is how we will close the disability pay gap and improve Special Educational Needs and Disability support in our schools. "That’s why I stood as a Parliamentary Candidate last year in the 2017 General Election. It was fun, frantic and exhilarating, filled with lots of firsts – TV appearances, live radio interviews and giving speeches in front of a 200-strong audience at a rally. A friend said that she had seen me “on the telly more times than in person” (three times in a week). "Although I did not win on that occasion, I continue to campaign for better disability related services in Oxfordshire and appear regularly on BBC Sunday Politics South. I am, however, optimistic that increasing the number of MPs with disabilities is within reach! In September I made my first speech to Labour Party conference, with my sixweek-old baby in my arms, in favour of our party’s introduction of a Disability Representative on our National Executive Committee. "I called on the Labour Party to campaign for a change in the law to enable more people with disabilities to enter Parliament by introducing all disability shortlists. These shortlists for a parliamentary candidate, are only composed of disabled people. Such shortlists are currently only allowed for the selection of women candidates under the Equality Act 2010. "We don’t have to accept the existing status quo. Things can change, just as they did in 1918. That change starts with you and your family! You can write to your local Councillor or Member of Parliament at any age, to tell them what matters to you and why more people with disabilities should be represented in politics. Go to: https://www.writetothem.com/
PING MADE CLUBS FOR RUE Rue Harvey was only 3 years old when he got his first set of golf clubs. Golfing dad Lee said: “I went around all the manufacturers of golf clubs and asked them if anyone could adapt a club to suit someone with one arm. Ping responded and sent back three clubs where they had taken out some of the weight and they added a junior golf bag and balls and just asked for a report of his progress. They said they would happily produce a full set of golf clubs for him. I take him up to the golf course regularly at the weekend and he comes with me and we play a few holes. There is actually a One Armed Golf Society. Looks like Rue will soon be a junior member!
FOCUS ON HAND SURGERY Retired hand surgeon Ruth Lester looks at the surgical options for children born with Radial Hemimelia Radial club hand or radial longitudinal growth disturbance or radial hemimelia are all names for a condition present at birth where one of the bones of the forearm on the thumb side is under developed or completely absent leading to a deformation of the forearm and wrist and a small or absent thumb as well as some underdevelopment of the index and even middle fingers.
Function All children will adapt to their own situation remarkably well as they grow and develop their manual skills. They will find solutions to most tasks expected of them. The aim of any surgery is to make those tasks easier to achieve. Surgery will enhance existing function but will not bring in new functions – i.e. if there is no thumb and the child is using the ring and little finger to grasp small objects – even if a thumb is created, the dominant side of the hand will remain on the little finger side. This is due to the representation in the brain which developmentally occurs at the same time as the physical development of the limb. However, there is emerging research around this area which may dispute what I have just said!
Appearance This condition occurs because of a ‘mistake’ during the development of the arm very early in pregnancy even before the mother knows she is pregnant. Most of the time the reason for the ‘mistake’ is unknown, although when both arms are affected, there is usually an underlying ‘syndrome’ (e.g. TAR, Holt Oram, Vacterl etc.) where there can be other anomalies of the blood, heart or spine.
The start of the journey
Your baby will have been assessed by a neonatal paediatrician who will support the diagnostic tests and management of your child as a whole. He/she would then refer you for a specialist opinion on how to manage your child’s upper limbs. Because this condition is quite rare - this opinion ideally should be obtained from more than one specialist working together in a multidisciplinary clinic: (See http://www.bssh.ac.uk/patients/childrens_hand_clinics. aspx ) From a surgeon’s perspective there is no urgency around this appointment but we do understand the challenges for a parent faced with having a child with obvious difference of the upper limb. The surgeons will want to meet with you and help you gather the best advice and information about a way forward for your child. This clinic appointment should therefore take place within the first few weeks of life. There is such a variety of degrees of this rare anomaly that each child needs to be assessed individually and offered an individually tailored approach. It is also clear that from the literature and the relatively small numbers of these patients, there is no single surgical solution which can apply to all situations, or indeed offers the perfect result. Specialist congenital hand surgeons meet around the world to discuss each other’s outcomes and try and formulate the best approach for your child. The very nature of reconstructive surgery is such that each surgeon will develop his or her own personal approach to which procedure works best in his/her hands. These aims and outcomes should form the basis of the discussion both between clinicians and with the family The principle outcomes of any reconstructive surgery to the upper limbs is to: a) Improve function b) Improve appearance (Pain is not usually a feature in this condition although some children experience discomfort particularly when challenged with a heavy load of writing etc. near exam time)
It is not possible surgically to restore a normal hand and forearm. However, it is possible to make the forearm straighter, and longer and to realign the wrist. Simple soft tissue release with or without tendon transfers and continuing splinting offers some improvement in terms of appearance, preserve a good range of movement of the wrist and reducing any existing growth disturbance. Wrist realignment with or without lengthening will offer a better appearance, but the wrist is more likely to be stiffer as a result.
The decision-making process The issues which we, as surgeons, look for to help with decision making as to whether to offer surgery, or which technique, are: 1) Is the condition unilateral or bilateral? 2) Are there other abnormalities in the child and therefore fitness for surgery? 3) Is there any elbow flexion and what is the length of the forearm? 4) How is the hand being used? –(this will not be apparent until the baby is a few months old and beginning to grasp objects.) 5) What are the parental views and understanding
Optimum age for surgery In major reconstructive surgery, the ease with which the child copes with surgery and the degree of improvement in function is dependent on age – the younger the child the easier the whole process. This means that the surgical path chosen has to be made at a time when your child does not have the capacity to decide… In 30 years' experience of working with children, I have never seen or heard of a child who subsequently argues with his or her parents about that decision making process when they are older! Options for treatment include the following with various combinations: 1) Stretching and splints of the wrist at night and ongoing support with aids and equipment – this is common to all approaches. 2) Soft tissue release to help release any tightness in the skin and soft tissue and move the skin from one side of the wrist to the other. 3) Tendon transfers to rebalance the wrist. 4) Realignment of the wrist with or without preoper ative stretching, using a frame – (see photo)
5) Centralisation/radialisation of the wrist involving internal fixing of the wrist usually with a wire. 6) Microvascular transfer of a joint from the 2nd toe to replace some of the missing radial bone 7) Pollicisation – rotating and shortening the index finger to make it function and look better as a thumb. 8) Lengthening of the forearm 9) Fusion of the wrist at skeletal maturity
Some general observations: The range of movement of the wrist will inevitably be reduced by a realignment procedure, which involves the bones and wrist joint, but the position of the wrist should be better so as to make some tasks, e.g. keyboard work, easier. In the most complex situation, when the fingers are limited in function, the child’s elbow does not bend, and the little finger side of the hand is more dominant, the child may well be better off without surgery and will use the continuing deviation of the wrist in order to achieve the basic function of getting his/her hand to mouth. If a decision is taken to try and achieve a straighter forearm and wrist, changes inevitably occur during growth particularly at the wrist level which mean that despite best surgical efforts, further deformity is likely to occur which may necessitate other operations as the child grows. So, if the decision is to undertake surgery at around age 15 months, it is likely to be the beginning of a reconstructive journey involving several operations which will continue till the child reaches skeletal maturity around 14-16 years old. There is no right or wrong decision! Children will adapt extremely well and can become independent adults who contribute to society with or without a surgical intervention.
AN ORDEAL WITH A POSITIVE OUTCOME "When our son Oisin Joyce was born just over two and a half years ago we discovered that he had a rare condition called bi-lateral radial aplaysia," writes his mum Lisa. "His forearms are shortened and his wrists turn inwards, and he has reduced strength in his hands and arms. His thumbs are also underdeveloped. Thankfully, apart from these upper limb differences as well as fused kidneys, no other issues were identified from the radiology tests performed shortly after his birth. "We were referred for genetic counselling but no cause was identified for Oisin’s upper limb differences. It is believed to be genetic but just can't be explained by what is currently known about gene mutations. He has always been very well medically which was a big relief to us, especially in those early days when we were very scared of what else might be going on. "We were referred to physio and occupational therapy when Oisin was three weeks old where we were shown how to perform daily stretching exercises of Oisin’s hands to maintain their flexibility in order to ensure that options for surgery were kept open. They also made splints for him to wear by night for the same purpose. "From day one, Oisin's plastic surgeon here in Ireland explained to us that, while there were a number of different surgeries that could be performed to help to address certain aspects of Oisin’s upper limb differences, they were all imperfect to greater or lesser extents and he suggested that we consider avoiding surgery altogether as he had seen children with this type of condition spend significant parts of their childhoods in hospital to very little avail. "On his advice, we sought opinions from a number of congenital hand experts in the UK. We were provided with a number of different options which ranged from doing nothing to straightening his arms by conventional methods of centralisation or radialisation surgery to a more radical double toe transfer operation. "The decision about surgery was a very difficult decision to make. In the beginning we read everything looking for a treatment and hoping to find a clear answer about what to do. Talking to other parents of children with limb differences helped us early on to see that, no matter what decision we made, Oisin would find his own ways of doing things that would allow him to live a very normal life. We also met another boy in Ireland who has the same condition and spoke to a few more families affected by it in the UK thanks to Reach. We were also able to connect with other families around the world through the Facebook page “Children with Radial Aplaysia”.
Oisin Joyce, aged two and a half
"In the end, we decided to opt for surgery and we felt most comfortable with Professor Simon Kay's (Leeds General Infirmary "LGI") option of free transfer of the second metatarsal bone from the foot. This would mean that Oisin would lose a toe from each foot and it would be used to replace the missing radius bone and provide a second growth plate to the forearm. It was the most complex form of treatment available but to us it seemed like the most promising. "Oisin’s plastic surgeon in Ireland fully supported our decision and applied for the funding to be put in place with the Irish health service executive (“HSE”). Once we got the approval for funding, it was a matter of waiting for a date for the first part of the surgery from LGI. "Oisin had his first surgery in June this year in which metal fixator devices were placed on his arms with pins going into the bones.
FOCUS ON HAND SURGERY That night on the ward Oisin was in immense pain shouting and crying all night. The pain abated in the following few days but returned on and off over the course of the next eight weeks as we were required to turn the pins in his arms four times a day to gradually move his arms into a straightened position. Some days we didn’t turn the pins at all as he just couldn’t bear the pain. His fingers were stiff in the first few weeks after the fixators surgery so he couldn’t use them, but he did get some function back during the later weeks. "Oisin’s second surgery, the double toe transfer, was an eight-hour long surgery. We were assured that the removal of the toes was straight forward and would have no impact on the function of Oisin's feet (though we remained extremely nervous about it). The area of greater concern was that it was to be a very complex and technically demanding hand operation. The surgeon had performed the operation a number of times before with mixed results but explained that there was a learning curve and so his experience would benefit Oisin. "Oisin had casts on both arms for seven weeks in total. During this stage, he experienced significant frustration at not being able to use his hands and he was extremely down in his form.
Seeing him so down like that, we worried if the whole experience could scar him psychologically but as soon as the casts were taken off he was straight back to his happy self almost like it had never happened. We had also been so nervous about going at his feet but there really was no problem and he was back walking very soon again. "Oisin had the casts removed four weeks ago at the time of writing this. His right hand is significantly straighter than before. His left is also improved though still somewhat turned in. We will be going back over in December for a follow up appointment with Professor Kay to discuss the results and consider whether Oisin may benefit from further operations, such as surgery for his thumbs. It was a really big undertaking that we didn’t fully appreciate, going into it. Although we were reasonably prepared for how difficult it would be for Oisin to have his two arms in casts and not have the use of his hands, we hugely underestimated how hard the fixators stage would be. "That said, we don’t regret our decision as we feel it will help his function and he seems to have bounced back very well."
TOUGH DECISION FOR GEORGIA'S PARENTS Abbi Prosho: "We have decided to go ahead with the surgery for Georgia and have been told to expect a date through for the op around Christmas time. "Georgia has her left arm affected by the dysplasia but also her thumb on her right hand is undeveloped and so neither hand is “fully functioning”. We figured that we need to do what we can to make life that bit easier for her as she gets older. "Still mixed feelings about it- mainly a worry that the surgery will need to be repeated through her lifetime as the bone wants to go back To it’s ‘natural’ position, but the surgeon has said that providing she continues to wear a splint at night, it should stay where it is. Other worry is that as she isn’t yet walking, (I fully expect her to be early stages of walking by Christmas as she’s nearly there now) the fixator and site of the wires are likely to get infected or knocked if she falls and we worry how this will effect her recovery. "I have been amazed at how she has learnt to use her arm, hand and fingers and what she can do with them. I watched her spend 10 minutes just fishing CD cases out of a rack using just her little finger! Given how well she adapts currently, there is that element of doubt as to whether the surgery is necessary, but then I have to remember just how much I do for her at the moment and question whether she would be able to manage it herself when older if we didn’t go ahead with the surgery. Even with the surgery, she is still going to have to make adjustments to how other people do things."
COMING TO TERMS WITH TAR SYNDROME Ben and Rosie Carter-Ives are both medical, but they had a rough time finding our what was the matter with their unborn baby: "Our process of ‘finding out’ was certainly not a smooth one. At the first scan at 11 weeks gestation, it was noticed by the sonography team that Lyra’s arms looked unusual on the ultrasound and thus referred us to the obstetric consultant for review. The consultant was very nice and repeated the scan herself, remarking that the arms were very difficult to assess at this early stage and in any case the incidence of specific limb abnormalities is very low - so low that she was 99% confident that everything was okay. Fast-forward two weeks to the next scan and the sonographers were still not happy with the appearance and referred us to the specialist centre in London. It was there that the absence of radii was confirmed and following genetic tests we had a confirmation of TAR syndrome. "We were warned that the differences seen could represent many things, including lethal skeletal dysplasia, so in many ways a diagnosis of TAR was a relief. We were asked a few times if we wanted to end the pregnancy - which did become more frustrating each time, as we quickly determined that wanted to continue and were excited to meet our daughter, no matter what. However, it did lead us through a lot of
uncertainty about the level of difference and difficulty Lyra would have after she was born and that is how we came to discover Reach - who were simply fantastic in showing how fully a life could be lived regardless of limb difference. "One of our biggest worries was always (and still is) how other children would react to seeing arms without radii and the subsequent positioning it causes. However this made us all the more determined to raise Lyra as someone who embraces her differences and meets challenges with determination and good humour. Engaging with Reach and social media has also helped reassure us that whilst some people can be cruel, there is also extraordinary kindness and acceptance in equal if not greater measure - which makes us excited to see her grow up. "From the perspective of treatment, once we had the diagnosis confirmed we were lucky enough to have a phenomenal geneticist who went through everything with us, and even acknowledged our existing knowledge before asking us where we wanted to start - to this day we are so very grateful for this approach. She put us in contact with Mr Sivakumar and the Occupational Therapists at GOSH who has been superb in explaining what the standard chain of treatment is and getting us started with stretches and exercises. He was kind enough to show us examples of previous surgeries he had performed and the outcomes. "Through our own research and through speaking to others on-line we also came to be aware of more debated correctional procedures that are performed in the USA and two surgeons' names repeatedly came up. We know that this procedure isn’t ’standard’ within the NHS but there are some surgeons around who are willing to attempt it. We are still open to second opinions at this stage because from our perspective, we only want the best and most comfortable and functional outcome for Lyra - whatever effort it takes. The information we have gathered from Reach and its members have been utterly invaluable, not to mention the friendships too! "All in all, whilst this was an unexpected and initially worrying turn of events for our family, it has given us an opportunity to become members of an amazing community in Reach, who will be like a second massive family for us all - and for that we couldn’t be happier."
Arturo Spanu Lyra Carter-Ives
19 Theo Grant Roshelle Briona Menezes
Isla Brown Isobel Caine
MEDALS GALORE! OUR PARALYMPIAN TRIATHLETE “I went over to triathlon in January 2017 and it was all very new and a massive challenge, right out of my comfort zone," said Claire Cashmore at the Family Weekend. "The biggest challenge was the bike and finding the right prosthesis. I hadn’t actually used a prosthesis since I was seven or eight and I wish I had used one before. "My stump has changed because I am using muscles in a different way so both bones and muscles are changing my stump has changed shape! Last year I was getting to know the bike and getting used to the sport. There are three sports in a triathlon – swim, bike and run and I managed to get silvers in the European and World Championships and Britain got the gold. Lauren Steadman who is on ‘Strictly’ got gold. We had both swum together and now compete in the triathlon.
HOLLIE WINS HER GRAND SLAM Hollie has just returned from Berlin European Para Athletics Championships with another shiny gold medal and championship record in the javelin. This means she has now completed the Grand Slam of titles: Paralympics, World Championships, Commonwealth Games and European Championships, all within a Paralympic four year period! It is also amazing that she is the only javelin thrower to ever achieve this honour and it puts her in a very exclusive group of athletes who have managed to complete the Grand Slam. Well done Hollie, from all of us at Reach!
"It’s been a successful year as I’m only 18 months into the sport. The World Championships were held in the Gold Coast in Australia and I travelled up the East Coast for a few weeks afterwards.
Very proud parents report that Curtis Lawton who attended Empire Grappling Events Ltd in Leeds, won two of his three matches, all in the weight class that was above his own.
“Now I’m into winter training, running miles in the freezing cold. It makes you tougher! The qualifications for the 2020 Tokyo Paralympics start in June with World Series, European and World Cup races and you need to collect points to qualify for Tokyo. If I make it to Tokyo I will have competed in five Olympic Games which will be amazing! I’ve got eight Olympic medals so far, one gold, three silver and four bronze for swimming.” Wow!!!
"There's literally nothing he's scared of attempting (though he's not too keen on heights,)" said mum.
SPEEDY EVIE Evie Lambert achieved some fantastic results at Doncaster Dartes swimming competition. She won a clutch of medals: two golds, one bronze and a speeding ticket in her IM. All five of her races were Personal Bests. "Very proud," said mum.
ALL-ROUND SPORTS TODDLER Harrison Algar has just gained his Octopus 1 swimming badge at just two and a half years old which is incredible as it’s aimed at five to eight year olds. His swimming success came on top of his winning player of the week at Rugby Tots for his kicking ability so our little sport billy Reach boy is doing fab!
PUSHING BOUNDARIES REACH SWIMMERS AIM FOR THE PARALYMPIC TEAM Luke Batty has been selected for the British Swimming World Class programme as part of the Para Academy Squad. Meghan Willis is on the same programme - a huge achievement which they are both very excited about. The selected athletes receive access to world class sports science services, advanced training camps and competition opportunities and support from British Swimming performance staff and National Institute of Sport programmes across the UK. Benny Romberg has just been to his First National Junior Para Championships. "What a great experience to be part of!" said mum Nicola. "It was lovely to see and meet REACH members. Now we just need to get Benny involved with a para swimming club. We are now members of the London Disability Club in addition to his local club, so he’ll have coaches at the Para events."
'STRICTLY' STAR LAUREN "My friends would say that I dance a little bit like a baby elephant!" wrote Lauren on her new role as 'Strictly' star. She has proved them all wrong! Lauren may be more used to the sports arena than the stage, having attended her first Paralympic Games in Beijing, when she was just 14. (She now holds the impressive title of double World Champion Paratriathlete and five times European Champion in her event.) But she is loving the limelight. “I'm looking forward to pushing myself and any boundaries I may encounter with having one arm. I like to succeed even if the odds are against me,” she said when starting 'Strictly'. Since then she has become a real dancing star and was still in there with a chance as Within Reach went to press.
FASHION MODEL KELLY Kelly Knox has been chosen to model for Primark's Christmas campaign and she sings the company's praises for being "an incredible innovative brand, pushing boundaries, breaking barriers, advocating diversity and inclusion. "This is about showing the world all bodies deserve representation in the fashion industry - you don't have to be perfect to be beautiful, you don't have to be perfect to be successful. Beauty and success lies in the power of being unapologetically YOU, wearing self love like armour, believing in YOU, being resilient, never giving up on a dream, knowing everything and anything is possible - even when others say you can't..especially when others say you can't!!" she said.
SAMUEL LOVES COUNTRY SPORTS Samuel Hammond, six, has a pony called Amy. He is missing his right forearm with a non-functioning elbow joint and two fused fingers, but he has no problem controlling his pony. Dad had horses when he was a child, and they wanted Samuel to take part in as much outdoor sports as possible. Samuel is a keen shot with an air rifle with standing targets, he can use a single handed salmon fly fishing rod and the next step was the pony. Amy is a 100% child lead rein dream pony. Samuel helps to muck out and pooh pick the field. Samuel loves all outdoors stuff. His grandparents are farmers so he enjoys helping out around the farm ( thinks he's the boss) and the pony lives at the farm so Samuel can safely ride off roads. Samuel said: " I like trotting Amy and cuddling her and giving her kisses."
"Never give up on your dream. No matter what if is. I want every person to know that your body can never define you. "
REACH BALLERINA Poppy Wiley lives for ballet! By half term she was in her 6th ballet show. Ballet has been her passion since she was four years old. When she’s not at ballet class she is at home practising. She has even been spotted practising her moves while waiting for prosthetics appointments! Ballet has given Poppy so much confidence.
THANK YOU ALL !
WONDERFUL GREAT GRANDMAS
TOOT TOOT! ALL ABOARD!
The Grace family took their ride-on steam train to village fêtes all through the summer and raised a total of £474 for Reach. "At the start of May we ran the train at an event in Beaconsfield. We were fortunate to have some help from the Tulloch family as this event was very busy and also from my parents. In the photo is Max Tulloch (who is a Reach member), Oliver Tulloch and my Reach daughter, Jessica Grace "
THANK YOU ALL! Oakley Lynch’s Great Grandma is part of a singing group called the Tuesday Girls. This year they collected donations for Reach at all of their gigs and raised £500!
Harry Peppers great Nana, passed away in June, aged 87. She and Harry were very close. She was a wonderful, loving and generous person. She adored Harry and was always the first person to offer sponsorship and donations whenever we raised money for Reach. Donations in her memory were made to Reach at her funeral and £357 was raised. Harry also read a poem at her funeral he had written about her. So proud of him.
ALLEYN'S SCHOOL RAISED £2,500 Lucy Sherrington's old house, Dutton's, at Alleyn's School, Dulwich, raised £2,500 for Reach
CREDITON DIVERSITY FESTIVAL
Nathan Morgan raised £200 at a touch rugby tournament with Bryncethin RFC and added £50 raised in a raffle with his company, Graham Paul Chartered Accountants. Sussex R C Car Club charity raffle / club charity weekend raised £520. Emily Gribbin donated £20 in memory of Luke Edward Low. She wrote: “ I am so grateful to your charity for providing support to families who are affected by this condition – my thanks to you and all that you do.” £480 were donated in lieu of floral tributes. Richard Kendall ran the Virgin 10K and raised £320.01. Mervyn England at Kenex Engineering donated £50. Nicola Phillips from the Jack and Jill Darts League in Llanelli raised £140 in a pairs charity match. Sarah Morgan climbed to the top of Mount Snowdon in August and raised £320. Geraldine Griffiths raised £90 with a jumble sale. Debbie Oates and Melissa Johns (Reach former Coronation Street actor) donated £600 from pay they received for a Radio 4 play ‘In My Own Skin’ in which the lead character has an upper limb difference. The Bohrso Rollers - Simon Bohrsmann, James Bohrsmann and Reach dad Kristopher Allen raised £2,113.90 cycling the 100 mile Ride London event.
TAVISTOCK FREEMASONS A Ladies Night at the Bedford Hotel raised £407 for Reach.
Frank Letch Mayor of Crediton, opened the first Crediton Diversity Festival in November. He is pictured with local police officers, police cadets and MP Mel Stride.
CHARITY NIGHT FOR TWO GOOD CAUSES Carol Moffat helped organise a successful charity night raising money for the Les Hoey Dream-Makers Foundation and for Reach. She said the event was well supported and raised a massive £1500. Lily Moffatt is pictured here handing in £750 to the dreammakers foundation. The other £750 was destined to go straight into Reach Scottish Branch funds.
IRELAND'S PARALYMPIAN VISITOR The Ireland branch held a meet-up in September at the gym Evolutis in Coolock Dublin. There were games, face painting, balloons and finger food. Ellen Kane the Irish world para swimming champion came along and got a ton of pictures with the families. She also donated some brilliant Irish team tops that she had grown out of and we raffled them off to the families there.
GREEN LIGHT FOR KATY Katy Martin has passed her driving test with no car adaptations. Very proud!
London branch held a picnic in glorious sunshine. "Werenâ&#x20AC;&#x2122;t we lucky with the weather this time!" said South London branch coordinator Nicola Romberg. Rhys Bevan-Davies loving his new bike arms
POSITIVE MESSAGES Elizabeth Wilmshurst has produced a series of posters with positive messages perfect for bedroom walls. These will be limited editions available online. Contact HO for details. This is Kitty's favourite!
Rhian Hughes aged 8 proving it's ability that matters!
LOOK WHAT HAS ARRIVED IN THE POST AT REACH HEAD OFFICE!
Lauren Steadman's mum Sharon sent us this stunning signed photo thanking everyone for supporting Lauren and AJ on their Strictly Journey. What a testament to the 'Can Do' attitude of Reach members and the warmth and support of Reach families.
Charity No: 1134544