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Update

Spring 2o19 www.martinhouse.org.uk


Amelia’s story Amelia is eight years old and has quadriplegic cerebral palsy. Her condition causes spasticity, which makes her body stiff and stops her from being able to control her movement. Amelia and her mum, Shabnam, were referred to Martin House after Amelia contracted sepsis in 2016, where she spent four months in hospital. The sepsis caused intestinal failure, which makes Amelia very sick. Shabnam now sleeps on the sofa downstairs next to Amelia, to be with her throughout the night, as she’ll often wake with tummy aches and sickness.

Festival Fun

She said: “When Amelia went into hospital, it was really stressful. I’m a single parent and it’s just us at home. So when we started coming to Martin House, it was an absolute relief.” When Amelia was born, her umbilical cord was wrapped around her neck five times, which starved her of oxygen. As a baby, her symptoms were not as apparent, however as Amelia got older, Shabnam noticed she was missing her milestones.

The grounds of Martin House were turned into a mini-music festival as we held our second LodgeFest extravaganza in September. More than 130 young people, friends and family enjoyed music from local bands, along with DJ sets from Emmerdale actor and Martin House ambassador Jeff Hordley, and a young person who uses Whitby Lodge. There were also street food stalls serving curries, pizza and pancakes, along with mocktails, a doughnut wall and a dress-up photo booth. A tepee, kindly provided by PapaKata, housed the festival in our gardens, with bands including Pulverise, Liquid Brick, Otis Jones and Audio Republic. Clair Holdsworth, Director of Care, said: "Although it was a rainy day, it didn't put people off, and everyone had a fantastic time. We'd like to thank PapaKata for supporting us and helping us to put this event on, as well as all the performers, who made it such a special occasion." 2 Martin House Spring Newsletter 2019

It can be difficult for young people with life-limiting conditions to attend gigs or music festivals because of their complex needs, so for us to bring this experience to them is just fantastic." Clair Holdsworth, Director of Care

“She’s so bright and is always happy, but she’s locked in her body. Her brain and muscles don’t work together. Whenever she tries to do something, her body stiffens. At Martin House, the care team incorporate her physiotherapy into a fun activity, whether that’s arts and crafts, music or when the animals come to visit from Mary’s farm, so physio isn’t so daunting for her. “When she’s here, she learns to interact with different people. We have both had separation issues, with me leaving her, and her being away

from me. But here, the care team are so loving Shabnam and Amelia and playful that she doesn’t mind being away from me. She loves spending time in the library and can be there for hours reading books. I know that she will be stimulated when we come to visit.

Martin House has been so valuable to both of us. It’s the only respite I get. “If we didn’t have Martin House, I wouldn’t be able to cope. I get a full night’s sleep which I don’t get at home, because Amelia is awake often through the night, which means my sleep is broken and each day it’s hard to function. At Martin House, I feel so awake and revived.”

Your help and support gives parents the chance to take some time out from giving round-the-clock care when they come to Martin House. You can donate to Martin House today by going to our website:

www.martinhouse.org.uk/donate Martin House Spring Newsletter 2019 3


MEET

Cath Todd

Cath Todd has recently joined Martin House as our Head of Therapies and Family Support – a new role designed to enhance and expand the services we offer. Cath is overseeing our bereavement team and therapies teams – which includes music and art therapies – and looking at how they may be shaped in the future. She says: “It’s about analysing what we currently have, benchmarking against other hospices and then putting together proposals on ways we could expand the variety of services we offer.” Among the plans Cath hopes to put in place are to offer complementary therapies, both to children and young people and their families, building on the holistic care Martin House provides. She adds: “It would be nice to offer that range, it’s another dimension to care for families. All the parents I’ve spoken to about it think it would be fabulous, so I think it would be well-received and well-used.”

She also wants to look at ways of providing more activities and events for families, which could include regular fun days. Cath says: “These could be a way to reach some of the families who either don’t stay at Martin House or don’t visit as often.” Cath is a physiotherapist by training, and previously worked in the NHS for 37 years, 30 working with children, and she was previously head of children’s therapy at Mid Yorkshire Hospitals NHS Trust.

For just £1 per ticket, you could be in with the chance of owning a brand new Citroën C1 with a three year warranty and servicing. This compact and stylish little motor could be the perfect run around for a busy mum or a great first-time car for heading off to university, so there really is no reason not to enter! 4 Martin House Spring Newsletter 2019

Having a child with a life-shortening condition can have a huge impact on day-today life for families. Simply going to the supermarket, doing the laundry, having a full night’s sleep or meeting up with friends for a coffee are all a struggle when your child needs continual care. At Martin House, we offer support groups to the families using our services. The support groups are an outlet for families to share their feelings and thoughts and are a place to meet others in a situation similar to theirs. Periodically throughout the year, groups will meet, often taking part in a themed day or an activity. For adult support groups, such as the parents’ group, it is a time to meet other parents of children and young people who visit Martin House, share stories and hear experiences. Currently, we have seven support groups available to our families, including a parents’ group, bereaved parents’ group and Time4Us2, for children whose brother or sister has died. For the brothers and sisters of poorly children who are currently being cared for at Martin House, we run a support group called Time4Us, for children aged 5-15. Last year, the Time4Us group went on a trip to Go Ape! at Dalby Forest, having the chance to take part in an exciting day of outdoor adventures with new friends. We’d like to thank Go Ape! at Dalby Forest for this opportunity and their continued support.

She says of Martin House:

“It’s really lovely here, it feels like a family. This is an opportunity to come and make a difference, and I’m really excited about the future.”

Win a Citroë en C1! Thanks to the generous support of our longstanding supporters, confectionery firm HARIBO and car dealership Evans Halshaw Citroën, our Grand Car Raffle returns this summer for the ninth year, having raised over £290,000 for children and young people needing hospice care in our region.

Being the extra support

Every ticket you buy will make a difference to a family in your local area, ensuring they receive vital care and support wherever and whenever they need it.

We would like to say a huge thank you to HARIBO and Evans Halshaw Citroën of Whitehall Road, Leeds, for their continued support of our Grand Car Raffle, ensuring that all proceeds of the raffle go towards the care of Martin House families.

Time4Us is an outlet for my daughters to share how they feel, as they can speak to a member of the care team who will always listen. They feel very special being able to go on trips and take part in days which are all about them having fun and where they come first, as often they have to come second to their sister because of her needs. “Their trip to Go Ape was something just for them, where they could meet other brothers and sisters with poorly siblings, have a really fun time and just be kids. They got to experience a number of outdoor activities, such as going on a zip wire, which was a huge confidence builder for both girls as they overcame their fears which helped them to feel, in their own words, ‘really brave’. Lucy, mum to Ameeliah, Ruby and Rayya

Because of your support, Martin House can facilitate these groups, ensuring our families are looked after as they go through difficult times. You can find out more about our support groups by going to:

www.martinhouse.org.uk/supportgroups

£500

pays for a siblin gs’ group to enjoy a day together, mee ting other children and ta king part in a fun ac tivity

Martin House Spring Newsletter 2019 5


Dad-of-two Matthew Wilson is taking on an epic challenge for Martin House by climbing Mount Kilimanjaro. Matthew, 31, who’s from Skipton, is making the 4,900m ascent up the peak – the highest mountain in Africa – in a 10-day expedition and has already raised nearly £5,000. He decided to take on a fundraising challenge having retired from the rugby pitch after playing for 20 years. He said: “I’ve got two children, and I’m very fortunate they are healthy, so I wanted to support a children’s charity. Martin House and the work it does just stuck out straight away.” The Kilimanjaro challenge will take Matthew six days to climb the peak – and a further two-anda-half days to descend. Matthew added: “It will be 30 degrees when we set off, but by the time we get to the top the temperature will drop to minus 30. It takes longer to climb than to descend because it’s classed as

extreme altitude, but we don’t take any oxygen, so we have to take it slow to adjust.” Matthew has been tackling the Yorkshire Three Peaks as part of his preparation, as well as running and gym training. He also took part in a treadmill challenge in the entrance to Tesco in Skipton in December, raising £333 towards his total. He is being supported by his wife Abigail, who is charting his progress on Facebook and Instagram, and running his Just Giving page, and his employer, Skipton Hire Centres, who have been supporting his fundraising. He said: “I have been really pushing myself with the training so hopefully it will pay off when I am up Kilimanjaro. I just want to raise as much money as I can, to make a difference to the children at Martin House.”

Take to new heights this June! Inspired by Matthew’s Kilimanjaro challenge?

Why not take part in a challenge a little closer to home and clamber to the tops of Whernside, Ingleborough and Pen-y-ghent on Saturday 15th June! Join #TeamMartinHouse and fundraise your way to the top. Our partner company for this event, Kuta Outdoors, will be there to guide you along the way and offer practice walks prior to your challenge, to build stamina and endurance. It costs just £30 to register and we ask you to raise £150 in sponsorship to take part.

Go to www.martinhouse.org.uk/yorkshirethreepeaks to find out more today.

6 Martin House Spring Newsletter 2019

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Kilimanjaro challenge

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ank you k you • Thank you • Thank

Martin House child Kacie-Mai, Community Nurse Joanne, Corporate Partnership Manager Jason, Martin House mum Charlotte and supporters Lorraine and Malcolm, are amongst the cast who have appeared in a TV commercial that has aired on ITV throughout March. The TV advert, the first of its kind for hospices in our region, was produced collaboratively by 11 hospices in the Yorkshire and Humber region, including children’s and adults hospices, to raise awareness of hospice care. Director of Care, Clair Holdsworth, said: “It was great to work with other hospices in our region to collectively develop an advert that shines a light on our work. The aim was to raise the profile of hospice care and encourage people

to find out more about the local hospice in their area. The cast of extras consisted of a whole range of people from across the hospices – doctors, nurses, patients, volunteers, therapists, fundraisers, support staff and even a couple of therapy dogs!" The advert has been shown on ITV across the Yorkshire region, helping us to reach as many people in our area as possible.

Barclays celebrate successful year Barclays and Martin House have celebrated a fundraising partnership which has made more than £41,000 in a year.

Walk which raised more than £17,000 alone in sponsorship from colleagues, customers and local business professionals.

The Barclays Corporate Team in Leeds raised £41,592 after supporting Martin House as its partner charity in 2018 through a variety of events and activities.

“Huge congratulations to all involved with £41,592 raised for this very worthwhile charity.”

Jacklyn Hersant, Relationships Manager at Barclays Corporate Team Leeds, said: “The team in Leeds supported Martin House as their nominated charity in 2018 and through organising a number of fundraising events throughout the year. “This included corporate golf and football days, an exclusive cinema event for children and families of Martin House, and most recently a Three Peak

Kyla de Lehenstein Collins, Partnerships Manager at Martin House, said: “We would like to say a huge thank you to the Barclays Corporate Team in Leeds for their wonderful support this year, and for raising such an incredible amount of money – equal to the cost of paying for a nurse on our care team for a year. “Without the support of firms like Barclays, and bespoke partnerships like this one with the local Barclays corporate team, we couldn’t continue to provide care and support to families across this region who desperately need it.” Martin House Spring Newsletter 2019 7


London Marathon

Look out for our five worthy runners who will be taking to the streets of London in their bright orange Martin House vests! Date: 28th April 2019

May

Glitter Ball Our most glamorous event of the year takes place in May at the prestigious Rudding Park Hotel in Harrogate. A guaranteed good night out for a good cause! Date: 10th May 2019 Leeds Half Marathon

This event has been a benchmark of the Martin House events calendar for many years, and is deemed the ‘stepping stone’ event for the Yorkshire Marathon. Date: 12th May 2019

June

Leeds Dragon Boat Race The ultimate competitive teambuilding activity at the very picturesque Roundhay Park. Gather your colleagues, friends or family together and get rafting your way to the finish line! Date: 19th May 2019 Golf Day Take in the golfing green of Wetherby and tee off with your golfing friends. Many exciting prizes to be won on the day! Date: 14th June 2019 Yorkshire Three Peaks Fundraise your way to the top with this classic regional challenge and take in the beautiful sights of Yorkshire on the way. Date: 15th June 2019 Leeds 10K

July

Join the crowds of runners taking part in the 2019 Leeds 10K and represent Martin House in your Team Martin House vest. Date: 7th July 2019

8 Martin House Spring Newsletter 2019

Our b e sellin st g runn in even g t

Centre Stage Final Made it through the heats? Now’s your time to battle it out for the chance to play at Reading and Leeds Festival 2019! Date: 25th July 2019

York 10K

The York 10K is renowned for its scenic route, with many historic landmarks to spot on your way around the city. Date: 4th August 2019

Simplyhealth Great North Run Great for those seasoned 10K runners who don’t quite fancy a marathon, the Simplyhealth to Great North Run is back for 2019. Represent Martin House in One ff your Team Martin House running vest, along with 57,000 other tick o ket uc runners! Date: 8th September 2019 the b list!

Open Day

The only time in the year that we open our doors to the public. Come and see how your support helps our families! Date: 6th October 2019

October

April

For the tenth year, we’re looking for artists and bands aged 22 and under to take part in Yorkshire’s largest music competition! Dates: 23rd, 24th and 25th April 2019

December

Centre Stage Heats

September

August

Take part in 2019!

Yorkshire Marathon A little bit closer to home but a marathon all the same. Wear your Team Martin House running vest as you make your way around the centre and suburbs of York. Date: 20th October 2019 Light up a Life

Our three services in Boston Spa, Skipton and Bradford offer a time of reflection to remember someone special. Take this opportunity to join others and celebrate the lives of loved ones. Find the dates for our services on our website.

Watch this space!

Strictly Get Dancing

Fancy yourself as the next Fred Astaire or Ginger Rogers? Learn to dance over six weeks and showcase your steps on show night. We promise an evening of glitz, glamour and plenty of sequins! Keep an eye out on our social media pages and website for more details!

Keep up-to-date with our events this year at www.martinhouse.org.uk/events Martin House Spring Newsletter 2019 9


They received their premiere at the event at the University of York, which also featured a Q&A session. The young adults are taking part in a joint project between Martin House and St Leonard’s Hospice in York looking at how young people can transition from children’s hospice care to adult hospice services, as more children live into young adulthood with life-limiting conditions. Dr Jan Aldridge, consultant clinical psychologist at Martin House, said: “It was a very special evening. The audience really enjoyed the films and described the whole event as ‘inspirational’. “It was also wonderful to see members of the group talking so confidently to the audience.” Dr Bill Hulme, medical director at St Leonard’s Hospice, said: “The group’s sense of humour really shone through with their imaginative remakes of classic films. The design, production and starring roles were led by the young adults, and it was great to see it all come together for the festival.”

New Look 3D tour

Have you ever wanted to take a look around Martin House, but haven’t been able to come to one of our open days? Well now you can explore the hospice online thanks to a cutting-edge 3D virtual tour. You can take a look around the living and dining spaces, peek into bedrooms and bathrooms, and experience the multisensory equipment in our playroom, teenage den and sensory rooms. It also includes hotspots throughout the building, with information, pictures and videos of some of the activities and the teams who work at Martin House. The tour was created for us by Apollo 3D, who captured every centimetre of Martin House on 10 Martin House Spring Newsletter 2019

specialist 360-degree cameras. It is hoped that the tour can be used by our community team, as a way of introducing Martin House to families who haven’t visited us before, and also by our fundraising team, to give supporters an insight into what our care involves. You can take a look at the tour on the homepage of our website at martinhouse.org.uk

Thank you • Thank you • Thank you • Thank you • Thank you • Thank you • Thank you • Thank you • Thank

The group of around 12 young people, called Legless and Headstrong, starred and filmed in the series of spoofs, including Jurassic Park and A Christmas Carol.

Thanks to your support, we can make a real difference to the lives of children and young people with life-shortening conditions, and their families, but over the course of the year, what does that mean?*

we accepted

97

new referrals

We supported

and young people 402 children

101

children

received visits at hospital

in 2017/18

26 new families were referred to Martin House for bereavement support

bereavement support to

173 families

1,179

hours of bereavement support

2,285

231

overnight stays in our cooled bedrooms

*2017/18 figures

423 hours of specialist psychological support to children and families

overnight stays for parents

you • Thank you • Thank you • Thank you • Thank you • Thank you • Thank you • Thank you • Thank you

A set of film spoofs were the centrepiece of a film festival staged by a group of young people being supported by Martin House.

You Make It Happen!

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Legless and Headstrong on film

you • Thank you • Thank you • Thank you • Thank you • Thank you • Tha

Martin House Spring Newsletter 2019 11


“Her little brother, Theo, now two, is very boisterous but was always so careful when he approached Livvy, gently touching her arm to let her know he was there. She’d become so animated when he was near.” Just a couple of months after Olivia and her family had visited Martin House for their first stay, she became very unwell. “She appeared to be in agony, but we couldn’t identify the cause and didn’t know what to do. I rang Martin House and they said to pack a bag and get Olivia here, where they would take care of her. We stayed until the doctors and care team had got on top of what was happening. During our time spent at Martin House, the team were so reassuring at a heightened time of stress. We realised the importance of Martin House and felt very well supported. We knew we weren’t battling alone anymore.

Olivia's Story

When Olivia was born in 2011, she showed no signs of any problems with her health. But at 10 weeks old, Olivia began to have seizures and was diagnosed with West syndrome, which is a rare form of epilepsy. Her condition changed over time and became an undiagnosed neuro-degenerative condition. “She wasn’t following developmental patterns and hadn’t passed her hearing test when she was a baby, so we knew she was deaf. But we later found that she was also visually impaired and had no verbal speech,” said Siobhan, Olivia’s mum. “We were often told that she was 'severely disabled', but to us, she was just Livvy. Her disability didn’t define her.” At three years old, Olivia had a brain scan, where doctors found that her condition was life-limited. It was at this scan that Siobhan and Liam were told of Martin House. “I asked the doctors how she’d cope, and their reply was 'we don’t think she will'. We had the realisation of the enormity of Livvy’s condition and we were clutching at any signs that she might be

12 Martin House Spring Newsletter 2019

Nothing was ever straightforward but Martin House took so much of our worry away from us. well and come through. “We heard ‘hospice’ and we just couldn’t process the magnitude of everything being said. The word is so emotive and it’s not the direction you want to go in. But within ten minutes of our first visit to look around Martin House, we knew that being here felt absolutely right. I remember saying to my husband Liam, 'I could stay now', and he replied, 'so could I'. “Our first stay at Martin House was in January 2015. It was a breath of fresh air. The care team were focused on Livvy as a person and what we could do as a family. The sensory room was a particular highlight for us, as we could all relax together and watch a film in there. Olivia’s sister, Phoebe, now nine, absolutely loved coming here and the two would have movie nights in Livvy’s room. “Livvy would light up whenever Phoebe was around. Phoebe was unaware for a long time that Olivia was poorly, and because she had no worries, she could really bring something out of Livvy. Their relationship was so special.

“Nothing was ever straightforward but Martin House took so much of our worry away from us. We took a lot of comfort in the fact that the staff knew Livvy. “For our stays that followed, Livvy was always so relaxed. She loved the garden as she liked to be near trees and nature. She’d look at the shapes around her and in the summer she’d lay on the grass. When the animals visited from Mary’s Farm, she was always smiling and wanting a cuddle from them. Martin House gave us the opportunity to see The Nutcracker at the

£30

ily r a fam pay fo nsory ld u o c our se to use to spend m o ro , ments us mo precio ether tog

Photo Credit: Barbie Mann

Grand Theatre in Leeds, as part of their Northern Ballet collaboration project, where Livvy was able to sit on a bean bag in the audience, which was amazing for her.” In September 2017, Siobhan and Liam were told that Olivia had nephrotic syndrome, in addition to her undiagnosed neuro-degenerative condition, and that her kidneys would eventually fail. In April 2018, Olivia started to be very sick and was taken to the hospital. The family were then referred to Martin House for end of life care. “We’d spent a week here after being referred. Every night we were saying goodbye, not knowing if she’d still be with us when we woke. It was a heartbreaking but very precious time." Olivia died peacefully at Martin House in April 2018, with her family cuddled around her. “We’re grateful for everything Martin House has done for us and the ways they help you to remember your child. We feel proud to be connected with Martin House and we treasure all the memories we have made here. It was often the little things that really made us feel at home.” Siobhan and Liam are receiving bereavement counselling from Martin House, both in their home and as part of the bereaved parents’ group. Phoebe comes to Time4Us2, a group supporting children whose brother or sister has died. “The Livvy we want is the Livvy that we had. She was a very poorly girl, but we’re grieving for our perfect Livvy with the acceptance of all her complications. “It’s very hard for us that we don’t come to stay anymore as this was our place to be a family, but we’re so glad that it has been a part of our lives.”


Trustee receives MBE

Make a Will Month

The Queen’s New Year Honours list saw one of our trustees receive an MBE.

Rifhat Malik, 51, who has been a trustee for three years, was honoured for services to Muslim women and charity.

Mrs Malik said:

It is one of a number of accolades Mrs Malik has received recently, as she has also won the Islamic Relief Award for Services to Humanity, a Leeds City Council Compassionate City Award for Unsung Hero of the Year and the Inspiring Women Changemakers Heart of Gold award. In addition to her trustee role at Martin House, Mrs Malik, along with her husband Hanif is the co-founder of the Give a Gift charity, which they set up four years ago, aiming to get Asian people involved in mainstream charity causes. As well as her charity work, in 1995 Mrs Malik became the first Muslim woman to qualify as a fitness instructor in Leeds, working with more than 300 isolated women with her classes, as well as helping more than 40 black and minority ethnic women to become qualified instructors.

eBay gives us a boost To read more about our Trustees, go to:

www.martinhouse.org.uk/trustees

Make sure your loved ones are taken care of by making your will this May

I feel so proud and honoured to be awarded the MBE and will continue to do as much as I can to help and serve humanity. "Equally I am proud to be a trustee at Martin House, and the work and care carried out by everyone to help children and their families is phenomenal.

1 in 4

ar you rvices our se r by gifts fo cared wills t lef in

Wedding favours Jo, Alison & Paul

“I love the variety of the work and every day is different. My volunteers, Jo, Paul, Lesley and Matt, are working on a selection of specialist items including Hornby, music and Playmobil.” Alison and her team of volunteers are based at our Thorp Arch Furniture Warehouse and Showroom. Paul said: “I chose to volunteer for Martin House as I live near to the hospice and wanted to get involved with my local charity, as I retired three years ago. I like to do something for the community and this role is very varied. At the moment I’m focusing on many of the toys we have, and sorting these into sets, to increase the value of our sales.”

Could you help us to boost our eBay sales? Become an eBay volunteer today by going to:

14 Martin House Spring Newsletter 2019

This May, you can write your basic will for just £60, or write a pair of basic matching (mirror) wills for £110 (inc. VAT) with our partnering solicitors. There is no obligation to include Martin House in your will, but if you do choose to leave a gift to the hospice, it would be very much appreciated. Your gift will provide comfort, care and support to hundreds of children and young people with a shortened life expectancy, and their families. It will help them to make the most of the precious time n and they have left together, however childre le using op short that may be. ng pe e

www.martinhouse.org.uk/makeawill

Alison was aware of the work that we do, and with two daughters who had just left home, she wanted to work in an organisation that was making an obvious difference, in a role that had tangible outcomes.

www.martinhouse.org.uk/volunteer

basic will

Each year, our supporters have the opportunity to make a will for a discounted rate, as part of our Make a Will Month scheme in partnership with local solicitors. Making a will is an important way to ensure that the people and causes you care about are provided for when you are gone.

Find out more on the leaflet attached, or go to

Our eBay operations have had a surge in activity thanks to our new Online Sales Manager, Alison Straughan, and her team of volunteers.

“eBay is a really useful tool in the charity sector, acting as an additional shop window for items that have potential for more value and it opens Martin House up to a wider audience. It gives us an international presence, too, with 20-25 per cent of our sales being shipped worldwide.

£60

If you are planning your wedding or other celebration and would like to support Martin House as part of your special day, you can choose from an exciting new range of favours. We have updated our wedding and party favours, and we are now offering cards in lieu of favours and lottery favour cards, which give your guests a one-week entry into our lottery draw, and the chance to win £1,000. There is also a gift in celebration card, suitable for any special occasion, from anniversaries to birthdays. The cards cost £1 each, plus postage, with an admin fee for lottery cards, and can be bought on our website at:

www.martinhouse.org.uk/weddingfavours

Martin House Spring Newsletter 2019 15


Martin House Hospice Care for Children and Young People, Grove Road, Boston Spa, Wetherby, West Yorkshire, LS23 6TX Tel: 01937 845045 appeal@martinhouse.org.uk www.martinhouse.org.uk

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Registered Charity No. 517919. A Company Limited by Guarantee Registered in England & Wales No. 02016332. VAT Registration No. 686 5694 67

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Spring 2019 newsletter  

Get news and updates from Martin House.

Spring 2019 newsletter  

Get news and updates from Martin House.