Shinethe Shooting Star Chase magazine
Winter 2018
Transition care: moving into adult services Why transition care is so important for young people
Super (soaking!) Siblings’ Day
A day to remember
Rosie’s, Kenzo-Sion’s and Hollie’s stories
Make every moment count for babies, children and young people with life-limiting conditions, and their families.
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Welcome to the winter 2018 edition of Shine. Our welcome for this edition is from Karen Sugarman, Director of Fundraising Development, who celebrates 15 years at Shooting Star Chase. Karen works with the Fundraising Team to ensure our income is sustainable, enabling our care service to continue. Karen has been responsible for a number of projects including ICAP’s contribution to Christopher’s refurbishment, the Cosmos Therapy Zone at Shooting Star House and the 5p carrier bag levy with NEXT, as well as the X Factor winner’s charity single.
Highlights insideNews4 A day to remember8 Siblings’ Day10 Story Massage Award
Family stories6 Rosie’s story 12 Kenzo-Sion’s story 16 Hollie’s story
Feature14 Transition care: moving into adult services
Your Shooting Star Chase 9 A day in the life of a... Health Care Assistant 18 A look inside... activity days19 Fabulous fundraisers/Over to you
News
Welcome to Shine! Care we have provided in the last six monthsCare figures cover April 2018 to August 2018.
3,588Hours of Hospice at Home visits2,854 in Nov 17 to Mar 18
1,499Bednights1,633 in Nov 17 to Mar 18
688Families supported670 in Nov 17 to Mar 18
£3.3mMoney raised so far in 2018/19Against a target of £3.7m in Apr 18 to Aug 18
Shine Winter 2018
Karen also works closely with our Royal Patron, Vice Presidents, Patrons and high-profile supporters.
“I’m privileged to work at Shooting Star Chase,” says Karen. “As you can see from this edition of Shine, our work is always relentless so I’m honoured to work with such incredible colleagues. I’m so inspired by everyone and it’s an honour to meet and know the families we support. I am proud and humbled to know that whatever small difference I make, it’s making a significant difference to the families that need us now and in the future. I would like to take this opportunity to thank all of our amazing Shine readers, supporters and wonderful volunteers for helping us to make every moment count.”
Karen
A message from
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Earlier this year, Claire Collins and six of her close friends climbed Mount Snowdon – they took on the highest mountain in Wales in memory of Claire’s daughter, Annie.
Annie was born in April 2016 completing Claire, Steve and big brother Ralph’s family. But sadly, just a year later, Annie became unwell with a chest infection which quickly developed into pneumonia. Despite bravely battling the infection, Annie tragically passed away a week before her first birthday.
So her family could say goodbye to their precious daughter, sister and granddaughter, Annie was moved to Shooting Star Chase. Claire said: “Shooting Star Chase enabled us to spend time with our beautiful Annie after she had passed away.
“They gave us much needed time to cuddle her, to kiss her, to tell her how much we loved her and for our tears to flow. It also meant that some of our family and friends were able to come and support us and say their own goodbyes whilst seeing Annie ‘sleeping’ so peacefully.”
Looking back on the climb, Claire said: “Climbing Snowdon was tough, but our determination and team spirit made us continue – even through torrential rain, thunder and lightning! When we eventually made it to the summit we all placed our hands on the orientation plaque. The exhilaration of reaching the top and of course the emotion of doing it for Annie made it such a special moment. We then blew some bubbles up to Annie and drank some bubbles ourselves.”
Team Annie climb Snowdon
To donate go to shootingstarchase.org.uk/donate or call 01932 823100
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Every summer as part of our bereavement service, our two hospices invite bereaved families to Remembering Day (Christopher’s) and Memory Day (Shooting Star House), to take part in special memory activities and reflect through poems, music and photos.
Many supported families feel a strong connection to Shooting Star Chase so at Christopher’s families are given a copper leaf engraved with their child’s name and at Shooting Star House they’re given a star – these are hung on our memorial trees and can be visited whenever families feel they need to. Families also have the opportunity to take part in memory activities such as making salt sculptures or simply grieve with close family.
The day always includes a balloon release – made even more poignant by each family writing a message on a small tag attached to the balloon.
“You gave us hope that our son will never be forgotten.”
“A lovely day for the whole family to remember a short life.”
“It was a very emotional day, but a chance to reflect too. I am leaving with a light heart and feel very privileged to have been part of this beautiful memorial day.”
“The slide show of photos was really very special and emotional. To see all the lovely children was a highlight of the day for us.”
“Under very hard circumstances it was a very special day.”
“The balloon release was very moving and a spectacular tribute for everyone to participate in.”
News News
“A very special day that meant so much to us as a family.”
5To donate go to shootingstarchase.org.uk/donate or call 01932 823100
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“I’d lost quite a lot of blood due to the abruption and immediately after I’d given birth, Rosie was taken to the Royal London because she wasn’t using one of her lungs,” explains Marie. “They wanted her to have nitro-oxide gas but by the time she’d arrived she’d pulled through and actually didn’t need it. However it went downhill from there. They told me the majority of her brain was damaged and the only part that wasn’t was the part telling her to breathe.” Rosie had spastic quadriplegic cerebral palsy and if this news wasn’t enough of a blow, Marie was told she’d have to be prepared that Rosie may not make it past three months.
“It was so much to take in and believe. She looked just like a normal baby, rolling around and moving, but apparently this was using a baby skills brain that all babies have up to three months,” says Marie. Rosie then started having little jerking movements and following an MRI she was diagnosed with Lennox-Gastaut syndrome, a rare form of epilepsy that varies from child to child and is very difficult to treat. “They kept her in hospital for a month before transferring her to our local hospital for another month. She wasn’t putting on any weight so they gave her a gastrostomy to help her feed. She was so tiny.”
Defying the odds and prognosis, Rosie was eventually allowed to go home and even started school. “She was doing really well, she’d not had to have any operations or anything and then her leg was broken whilst at school. It was over the six week summer holidays and we were in and out of hospital, and that’s when she got pneumonia, pseudomonas and
a staphylococcal infection – she got everything. After her leg I think her body went into shut down mode. She couldn’t move, couldn’t do any physio. I have other children – Ronnie, Tilly, Joe and Ellie, and it got to the point where I needed some help.”
Marie had been told about Shooting Star Chase when Rosie was first born but had had reservations. “I was like ‘no, I just can’t’, you hear the word hospice and think ‘I don’t want to do that.’” However, following Rosie’s decline, Marie decided to reconsider. “I said to my mum that we’d just go and have a look. From the moment we pulled up it wasn’t at all how I had expected. I said to Mum – ‘I wish we had come here sooner.’”
Rosie and her family have been using the service for around six years. “At first I didn’t like to leave her – me, my mum and the kids would all come and stay with her. Now I drop her off and feel completely at ease because I know she’s being well looked after and it gives me a chance to do every day things and go out with the children.”
The family often use the hydrotherapy pool together. “She loves swimming, absolutely loves it. She’s usually quite stiff and when she’s in the water she relaxes, you just hold her head in the
pool,” says Marie, “My mum can’t swim, but she loves to come with Ronnie and Tilly.”
Recently Rosie’s health has declined. “She’s had to go on a BiPAP machine which helps keep her airways clear at night. She’s on oxygen and cough assist. She breathes predominately through her mouth so she needs a full facial mask to force in the air to keep her lungs open. I sleep in with her because if she moves, her mask moves and the machine beeps so I have to be in with her to monitor it throughout the night. It’s been a tough few years and the only place that has really helped me is Shooting Star Chase.”
“We were recently in hospital for three months and as soon as we came out the team at Christopher’s were in touch to offer me some short break care. I don’t go into a deep sleep when I’m at home because I’m always listening out for machines, so when Rosie’s at the hospice I just have the best sleep. I appreciate it a lot – it gives me that little bit of time to myself and be with my other children, knowing Rosie’s being well looked after.”
Family story
Rosie’s storyFamily story
“I know she’s being well looked after and it gives me a chance to do every day things and go out with the children.”
Following a traumatic birth after suffering placental abruption, Marie had to endure every mother’s worst fear as her baby daughter Rosie was whisked away in urgent need of care.
7To donate go to shootingstarchase.org.uk/donate or call 01932 823100
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A day in the life
“I can honestly say that I encounter heroes every day in my job and it is an honour to do so.”
Zoe Koster has recently joined Shooting Star Chase as an Activities Volunteer to help at Christopher’s and at our popular activity days.
“I’ve only been volunteering at Shooting Star Chase for a short time, but I feel very privileged to be part of the team. I can see what a vital role this service provides to families at the time they need it most. After chatting to one mother who’s been supported by the charity for many years, I could see that she considered the staff an extension of her own family. I cannot praise Shooting Star Chase enough for their tireless work.”
Why I love…
News
On one of the hottest days of the year, Shooting Star House, our Hampton hospice welcomed 32 siblings from both our hospices to have fun in the sunshine, enjoy some arts and crafts and, of course, eat cake!
Siblings can often feel alone and isolated and some experience mental health difficulties because of the additional challenges that they face. Our siblings’ groups give them the opportunity to explore and share their feelings in a safe environment whilst having fun.
From designing and making the latest in teddy bear fashion to painting a huge banner to mark the 13th birthday of Shooting Star House, there was something for everyone.
To round off the day, everyone headed outside to take on the ultimate obstacle course – with plenty of water pistols added in for good measure! As with any good birthday party the day ended with plenty of chocolate cake.
Super (soaking!) Siblings’ Day
Siblings can often feel alone and isolated and some experience mental health difficulties because of the additional challenges that they face.
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A day in the life of a… Health Care AssistantAlissa Colucci-Jones has worked as a Health Care Assistant at Shooting Star House for six and a half years. She explains what a typical day looks like at our Hampton hospice.
“To be honest there isn’t really a ‘typical’ day – we always start our shifts with a handover, but after that my work really depends on the needs of the child. You have to be really creative in how you interact with each child, keeping in mind their diversity, abilities, interests and condition, to give them experiences that they may not otherwise have the opportunity to encounter.
“Some of the activities that we might do during the day include baking (ranging from Masterchef pieces with a pair of teenage siblings to using weighing scales and mixers, complete with a specially adapted big switch, for children who are younger or have less mobility), hydrotherapy sessions, pamper sessions including shopping trips to Kingston, long bubble baths, hand massages and nail painting, craft projects and movie nights.
“Some days we might go on a trip and once a month my evening will be centred around what our youth group are doing, which often means I’ll be doing lots of crazy things during my shift! Investing time and imagination in these daily interactions has allowed me to build a meaningful rapport with many of our supported children and families, which is the greatest privilege. These bonds, formed during the most joyful days, are pivotal in making the inevitable bad days a bit more manageable for our families.
“Providing end-of-life care is the most significant part of my job and requires great individualised
To donate go to shootingstarchase.org.uk/donate or call 01932 823100
consideration to ensure the last stages of life are dignified, meaningful and a positive and peaceful memory for the families. Making memories is central to the process so sometimes my shift will involve making keepsakes including hand casts, personalised jewellery and canvases for the family to cherish for ever.
“Whatever a shift brings, the resilient strength and positivity of the children and families we support always inspires me. I can honestly say that I encounter heroes every day in my job and it is an honour to do so.”
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News News
Caroline Brown, Complementary Therapies Coordinator, has been given a Story Massage Best Practice Award for her outstanding work at Shooting Star Chase and at a school for children with profound and complex needs.
Story Massage is a fun and interactive way of combining the creativity of storytelling with the benefits of massage. It allows supported children and their families the opportunity to share the benefits of this simple positive touch activity. It empowers families by giving them a tool they can use to interact with their children in a calm, non-threatening way.
Caroline uses Story Massage in a number of ways – sometimes a favourite story may form part of the session, other times songs or poems may be used. Story Massage works in groups or one-to-one with a supported child or parents, siblings and grandparents. Story Massage can help with relaxation, anxiety, tactile defensiveness, sleep problems and communication difficulties.
The Story Massage Best Practice Award recognises an accredited
individual and their achievements in using Story Massage at work, at home or within the community – well done Caroline on your prestigious award!
Iain was first introduced to Shooting Star Chase when his son Lachlan was diagnosed with an extremely rare genetic disease called Tay-Sachs. Sadly, on the day before Lachlan’s third birthday, while surrounded by his family and favourite toys, he passed away peacefully.
Iain and his wife Charis went on to set up the Lachlan Armitage Tribute Fund in Lachlan’s memory. The fund raises money for Shooting Star Chase and over the last 12 years has raised more than £560,000.
Emma Edwards, Head of Challenge Events at Shooting Star Chase, said: “We are all so very pleased for Iain on this wonderful achievement – it is truly deserved and we can’t
Iain Armitage, a supported dad and dedicated fundraiser, has been awarded an MBE in this year’s Queen’s Honours List for his services to fundraising for Shooting Star Chase.
Supported dad awarded an MBE
thank him and Charis enough for all they have done in helping make such a difference to other families who find themselves in the most unimaginable circumstances.”
Iain said: “I am thrilled, honoured and humbled in equal measure to have been nominated for this award. However, it is an award for the whole of the Shooting Star Chase community and the incredible work that the fundraisers, carers and families do in support of their children. I hope we can continue to raise awareness together of the marvellous work that the hospices do.”
“It empowers families by giving them a tool they can use to interact with their children in a calm, non-threatening way.”
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What a lovely story!
To donate go to shootingstarchase.org.uk/donate or call 01932 823100
Kathleen Attrill not only volunteers for us and is part of our Egham and Englefield Green Friends’ Group, she has also decided to leave a gift in her Will to Shooting Star Chase.
“When I was told about Shooting Star Chase through my church not long after the charity began, I was eager to do what I could. Through the Egham and Englefield Green Friends’ Group I’ve fundraised through car boot sales, school and village fetes, and helped with collection cans in shops. I want young people and their families to continue to be supported and I feel privileged to be able to leave them something for the future in my Will.”
If you’d like to find out more about leaving a gift in your Will to Shooting Star Chase, visit shootingstarchase.org.uk/legacies
Why I love…
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“My stomach started to get excessively large very quickly making even the simplest tasks difficult; even sleeping was near impossible. At my next midwife appointment, they said I had three litres of excess fluid which needed to be withdrawn,” explains Acey.
Whilst undergoing the procedure, Acey, who suffers from sickle cell anemia, had an abnormal reaction. “She was in excruciating pain, had a ridiculously high temperature and the doctors told us they needed to perform an emergency caesarean,” says dad Salim.
It was shortly after the C-section they were told all was not right with their baby boy, Kenzo-Sion. Kenzo-Sion was born with a condition called tracheoesophageal fistula - meaning he had an abnormal connection between his oesophagus and trachea. Had he swallowed it would have gone straight to his lungs, instead of his stomach. “My heart sank, as I realised all hadn’t been right during my pregnancy and this explained why I was carrying so much excess fluid,” said Acey.
On the second day of his life, Kenzo-Sion was whisked off to St Thomas’ Hospital for an emergency operation. Acey remained in Queens Hospital in a coma leaving Salim going back and forth between hospitals to support them both.
Despite a number of set backs and several additional operations, Kenzo-Sion was eventually able to go home. However, just three weeks later, his condition deteriorated and he went into cardiac arrest. Back in hospital, he was then diagnosed with tracheomalacia, a condition where the cartilage in the windpipe hasn’t developed properly. After numerous
surgical alternatives, it was decided that he needed a tracheostomy where a tube is inserted into the windpipe to assist with breathing via a ventilator.
Intensive training is needed to care for a child with a tracheostomy and the couple went through months of tuition before Kenzo-Sion could go home. “It’s a completely different kind of care; you can’t comprehend or understand the level of work needed until you have to do it. The feeling of ‘public parenting’ at the hospital then followed us home. It wasn’t our family home – it was Kenzo-Sion’s care home,” explained Salim.
“Salim and I are the only two trained to look after Kenzo-Sion in our family, none of whom are local to us. They were of course all there at the beginning, but it’s too much for everyone to keep up living so far away,” said Acey. “We never had anyone that could help with looking after our son, not even for a couple of hours as his care is so complex, until Shooting Star Chase came along. We are so thankful for them.” Kenzo-Sion has short breaks at Shooting Star House in Hampton. “I think of the place and staff like extended family that are fully trained,” said Salim.
“It’s just been a godsend, especially with my surgery as well,” said Acey. Following a fall from the hospital bed, shortly after coming out of the coma, Acey hurt her hip and suffered excruciating pain for over a year. It was discovered that she had developed avascular necrosis – bone death in her hip joint. Acey had to have hip replacement surgery and is due to have her other hip replaced soon. “Knowing Kenzo-Sion is somewhere safe whilst I’m having my operation and recovering is such peace of mind,” says Acey. “Shooting Star Chase play a very supportive role. That’s what it comes down to: they’re there for us whenever we need them. We couldn’t have done it without them,” says Salim. “When Kenzo-Sion had his first short break it was a weight lifted just to have those few days. His care is 24/7, especially when he first came home, as he was fully ventilated 24 hours a day and fed through a PEG.” A PEG is a tube inserted into the stomach to help with feeding.
Now two and a half years old, Kenzo-Sion is doing well and loves his visits to Shooting Star House. “He loves everyone and likes making friends. We are so proud of him, he’s such a happy and sociable little boy,” says Acey.
“Shooting Star Chase has even helped save our relationship,” explains Salim. “It’s been a really intense time, we had some super lows – I wouldn’t wish it on anyone. There were times when it just felt so very hard – you need a break, but you can’t. It’s been constant since he was born – spending so long in hospital, Acey’s health and the coma. It has been relentless, so the short breaks just give us a chance to gain that little bit more strength that we need to carry on.”
Kenzo-Sion’s storyFamily story
Acey had what most mums would call a perfect pregnancy until around 32 weeks when she started displaying symptoms that would mark the start of a very difficult journey for her family.
Family story
13To donate go to shootingstarchase.org.uk/donate or call 01932 823100
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Feature Feature
Medical advances and improved care has resulted in many young people with life-limiting conditions surviving into adulthood. That’s why we provide transition care to help facilitate the move into adult services. We spoke to Christine May, Transition Coordinator at Shooting Star Chase, about why transition care is so important for the young people and families we support. What is transition care?My role is to help plan the transition for young people moving away from our children’s hospice; supporting them so that they get their respite, medical, care and recreational needs met in the future. When the young people that we serve move into adult services, their entire care provision changes – for instance access to funding changes and their care will no longer be paediatrician led, they will instead have multiple consultants, and how they access funding changes. It’s a huge change for many families and whilst there’s a vast amount of official guidance it’s very dependent on what’s provided in your local area.
Can you explain some of the key differences in a little more detail?One of the big changes that I help parents and carers with is something called ‘parental responsibility’. When someone has parental responsibility, they have the right to make decisions about their child’s care – this legally stops when a child turns 18. That doesn’t mean that they’re no longer responsible at all, but it becomes a shared responsibility and for many parents that’s incredibly
hard. They’re often the expert in their child’s care needs so it’s difficult for parents to have to share that decision making responsibility with healthcare professionals who potentially haven’t cared for someone with complex needs like their child’s.
Another key difference is access to services as many of the services provided at Shooting Star Chase are extremely limited in adult care provision. This is particularly true of therapeutic services – hydrotherapy, music therapy etc. – which are extremely beneficial to many of the families we support. Part of the reason for a lack of these sorts of services is medical advancements and improved treatments which mean children with life-limiting conditions are living longer; adult services simply aren’t geared up to support them. Adult hospices do not offer respite services like we do and they do not offer day-care provision like we do – where they do, it’s predominantly for the older age group. We’re now working with local adult hospices and informing them of young people who we think may need adult hospice support in the next 18 months. This at least ensures families know where they’re going to go next if the young person needs end-of-life care in their 20s. This development, I hope, will start to have a positive impact on families transitioning to adult services.
Do you think adult services will adapt and start providing therapeutic services given medical advancements are only going to continue?I think they will definitely improve; the challenge for commissioners is they constantly have funding pressures so they have difficult decisions to make when it comes to new service provisions. I sit on an adult end-of-life care board in Surrey and my role is to be an advocate for the young people we support. I’m constantly reminding them that although it may only be a small group of young people who
need adult respite services, it’s a growing number of young people; it’s important that I continue to push for adult service provision developments and give our families a voice. Aside from adult services not being designed to support young people with very complex needs, one of the other big challenges is the lack of trained carers in the community – you would have never seen ventilated young people living at home in the community previously, so care givers didn’t need to know how to support them. With more young people living at home on ventilation, this definitely needs to change.
At what point do families start working with you?Statutory organisations have a duty to families who have a child accessing health or social care services to start engaging them in transitioning when their child reaches 14. However, at Shooting Star Chase it’s a very different situation. Many of the families we support don’t expect their child who has a life-limiting condition to live into adulthood, so talking to them when their child is 14 about what’s going to happen when they leave us at 21 wouldn’t be appropriate. Most families, therefore, start working with me when their child turns 18.
There’s an awful lot for families to think about and cope with, if your role didn’t exist could they get transition support elsewhere?They could certainly get transition information, but being given that information in a supportive way and at the time they need it is quite different. There are a lot of decisions and processes so it’s essential families are supported through those. Many families feel very sad about the thought of leaving a service where they have felt safe and supported, particularly as, sadly, they know they’re moving into a world which is simply not resourced in the same way as children’s services.
15To donate go to shootingstarchase.org.uk/donate or call 01932 823100
Transition care: moving into adult services
Christine is working with 18-year-old Anita and her family
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Hollie was nine months old when her mum Emma started to notice some unusual behaviour in her daughter. “She started to have a fixation on her hands, chewing and sucking on them constantly,” explains Emma. “She’d also have really bad reflux, which meant she was vomiting all the time.” When Hollie began to lose her balance, alarm bells started to ring for Emma: “Lots of little things were happening that weren’t quite right, then she started having screaming and giggling episodes and seizures.” It wasn’t until Hollie was 18 months old that she was diagnosed with Rett syndrome, a rare genetic disorder that affects brain development resulting in severe mental and physical disability. The syndrome, which mainly affects girls, is on a spectrum and can affect each girl differently. Hollie has true Rett syndrome and is at the severe end of the spectrum. “Unfortunately she regresses quite badly,” explains Emma. “She would pick up skills and then lose them again, which has happened throughout her life.”
Hollie was 13 when Shooting Star Chase became part of her life. Emma says: “We were doing everything
on our own and as she was getting older it got harder. We always knew her condition was life-limiting but when people said about a children’s hospice I had a very different picture of what it would be. I always had a preconception, thinking, ‘Well she’s not going to die now’, but soon came to realise that’s not what a children’s hospice is.
“Since she’s been coming to Shooting Star Chase we haven’t looked back – Hollie adores coming. She won’t stay anywhere else – she’ll be at home or at Shooting Star House, those are the only places she feels comfortable.”
Over the years, the family have been supported by a number of services including short breaks and a range of therapies such as the hydrotherapy pool. “She hasn’t got great mobility, but in the pool it doesn’t matter,” explains Emma. “She loves to relax and it helps with her asthma too. She’d stay in there all day if she could. The care team are amazing with her; they know how much she loves her music so they put on the sound system, turn on the special lights and let her just listen and chill out.” Hollie also enjoys doing music therapy at the hospice as it gives her the chance to express herself through a medium she loves.
Over Christmas Hollie spent time in hospital, and, as she was so poorly,
she wasn’t able to go to back to school when she was discharged so the family benefited from a short break. “During this time Shooting Star Chase helped our family so much,” says Emma. “Hollie could go to Shooting Star House for a few days to give us a bit of a break, which made a big difference. It also meant we were able to go and be with Sophia for a while, Hollie’s 5-year-old sister.”
Now Sophia is getting older, Emma is keen to look into the Siblings’ Groups that are held throughout the year at both hospices. With activities and trips out, these groups offer siblings the opportunity to explore and share their feelings in a safe environment. Emma says: “Sometimes when you have a disabled child it’s easy to think it’s just you, so taking part in activities with other families is nice, not just as parents but also for Sophia.”
Since the beginning of the year, Hollie’s condition has got progressively worse. “Her organs are starting to shut down and her stomach has completely shut down, so she has a jejunostomy which helps her to be fed into her lower abdomen, but her bowels just can’t cope – they aren’t getting the right signals,” explains Emma. “It’s harder now that she’s older. She’s regressing and it’s difficult as we obviously want to keep her for as long as we possibly can, however, her body is taking over. We have to take each day as it comes. We try not to dwell on it because we have to make the most of what we have. I don’t know what’s going to happen with Hollie so I want to appreciate every day I have with her; we adore her and feel so lucky to have her. Every day is different with Hollie, but as long as she’s happy that’s all that matters – and she is here at Shooting Star House.”
Family story
Hollie’s story
“Every day is different with Hollie, but as long as she’s happy that’s all that matters – and she is here at Shooting Star House.”
Just like any teenager, 17-year-old Hollie absolutely adores her music – from RnB to Girls Aloud. But, unlike her peers, Hollie suffers from the life-limiting progressive disorder Rett syndrome.
Family story
17To donate go to shootingstarchase.org.uk/donate or call 01932 823100
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Fabulous fundraisers
Over to you
Kings of fundraisingThis year’s efforts by Major House have brought King’s College School’s fundraising total to an amazing £70,000, with over £11,000 being raised this year alone. Events included a sponsored walk through torrential April showers, from the school’s boat house in Putney to their classes in Wimbledon and a charity dinner held by sixth formers for parents. That’s what friends
are for During the last financial year, the Shooting Star Chase Friends’ Groups raised an incredible £170,000! Fundraisers ranged from music events, quiz nights and barn dances to bucket collections and carol singing. If you’d like to join one of our Friends’ Groups or start your own please contact [email protected]
A day to rememberA huge thank you to The Medicine Garden in Cobham and The Rolls Royce Enthusiasts Club Surrey Section for treating 28 supported families to a special day out. With luxury cars, entertainment, a delicious barbecue and cakes, families were given a day to remember.
Donate and feel great!With our brand spanking new shop on Northcote Road, Battersea soon to be open, we need to fill it with fabulous things! Your donations no matter how large or small will help to make every moment count for the children and families we support. Simply visit shootingstarchase.org.uk/shop to find out how and what you can donate!
We need you! Our wonderful charity shops are instrumental in helping us raise the £10 million a year required to keep our service running. We rely on volunteers to give their time and expertise in our shops, and now with 12 shops across Surrey and west London we’ve never needed you more! If you enjoy being part of a team and are passionate about customer service we would love to hear from you! Email us at [email protected]
Can your school support us?Does your child attend a local school, nursery or youth group? If so, we’d love to visit them to explain more about what we do and how they can help. As well as age-appropriate assemblies and talks, we can provide exciting fundraising packs and activity ideas. For more information about how your local school, nursery or youth group can support us please contact [email protected]
A look inside…activity daysOur aim is to make every moment count at Shooting Star Chase. We understand the importance of creating happy memories for the whole family, and our new activity days, which are held throughout the year at our hospices, offer just that.
Head of Care at Christopher’s Anne Bridgman explains, “We decided to start holding regular activity days for our supported families to give them a chance to spend special time together, catch up with fellow families and create and experience a wealth of excitement, fun and memories in the process!
“The days are themed to the times of the year and our dedicated play and activities team take a lot of time to think of fun and appropriate activities for the children to enjoy. Some of the children supported by Shooting Star Chase have very complex conditions so activities are specially designed to appeal to all the senses to ensure everyone can take part. We’ve welcomed some very cute friends in the shape of lambs and donkeys, baked and decorated lots of delicious treats and created wonderful works of art to take home and keep. We’ve even had a visit from a real-life mermaid!”
Fabulous fundraisers / Over to youA look inside...
19To donate go to shootingstarchase.org.uk/donate or call 01932 823100
Join us on our annual
Fire WalkTake part in an event like no other and put the soles of your feet to the test as you walk over burning embers up to 1200°F.
Saturday 3rd November 2018 7.30pm at Stoke Park, Guildford
shootingstarchase.org.uk/firewalk
Your moment to
DareUse promo
code SHINE to get 50% off the registration fee
The Fire Walk is open to ages 18+
