Shinethe Shooting Star Chase magazine

Winter 2017

The moment you’ll never forgetHelp us give families precious and unforgettable moments

Families become VIPs at afternoon tea

London Marathon team break records

Daisy’s, Max’s and Josh’s stories

Make every moment count for babies, children and young people with life-limiting conditions, and their families.

3To donate go to shootingstarchase.org.uk/donate or call 01932 823100 3

Welcome to the winter 2017 edition of Shine, which aims to show how your support helps Shooting Star Chase make every moment count for babies, children and young people with life-limiting conditions, and their families.

Our guest editor this edition is Sandi Hillery, Head of Care at Shooting Star House, our Hampton hospice.

When Sandi first joined the charity in May 2005, the hospice wasn’t even open and now, after 12 years leading the team at Shooting Star House, Sandi is retiring.

She began as outreach team leader, with no other staff in the team, and recruited the first members of staff to support families in the community. From that initial team of just three people, Sandi now manages a team of 50 nurses and care assistants working in-house at Shooting Star House and across Shooting Star Chase’s entire Hospice at Home team.

“It’s been a privilege supporting families through the most unimaginable circumstances over the last 12 years,” says Sandi. “I’ve been very lucky to work with an amazing team of staff and it’s been an honour to be able to support the families we look after. Knowing we can make a difference to families at the worst possible time makes this job so rewarding. I’ve met so many incredible children and families over the years and I will miss everyone when I leave.”

Highlights insideNews3 Running into the record books4 More tea, Simon?8 Two more reasons to shop9 A day in the life of a... Specialist

Fundraiser10 Makaton award10 A look inside… Summer Fun Day

Family stories6 Daisy’s story 12 Max’s story 16 Josh’s story

Feature14 The moment you’ll never forget

Your Shooting Star Chase 18 Fabulous fundraisers19 Over to you

Shine Winter 2017 News

And money raised so far in 2017/18

1,672 bednights1,539 in Oct 16 to Mar 17

3,570 hours of Hospice at Home visits4,146 in Oct 16 to Mar 17

Supported 681 families690 in Oct 16 to Mar 17

£3.4m Against a target of £3.3m in Apr 17 to Aug 17

Care we have provided in the last six monthsCare figures cover April 2017 to September 2017.

Welcome to Shine!

Sandi

Shooting Star Chase, Bridge House, Addlestone Road, Surrey, KT15 2UE t 01932 823100 f 01932 858399 e hello@shootingstarchase.org.uk w shootingstarchase.org.uk sschospices Registered Charity No: 1042495

Shooting Star Chase’s team for the Virgin London Marathon in 2017 achieved not one but two records for the charity. The team of 82 runners was the largest team in the charity’s marathon history, and between them they have raised £250,000 for our care service, breaking the record amount raised for any previous marathon.

The team was made up of four bereaved parents, 28 runners with a connection to one of our supported families, 18 runners from corporate partners and several local supporters, and they were cheered on by three teams at different locations on the 26-mile course.

As a thank-you to runners, Shooting Star Chase held a post-race reception at Central Hall in

Westminster, where the awesome team was greeted by their families, staff and volunteers with a big cheer, a celebratory drink, a massage and a hot meal. The refreshments at the reception were kindly donated by corporate supporters Fuller’s, Pelican Procurement and Les Caves Pyrene.

Supported dad, Ali Najefi, who ran the marathon with his brother-in-law and a friend said: “I did this for my son, Adnan. He goes to day care and we stay over at the hospice for a break, and they’ve been so good to us. We’re all proud to do this for Shooting Star Chase today – it’s nice to be able to give something back.”

The Virgin London Marathon is our most valuable challenge event of the year, and crucial to that income is people with their own marathon

place choosing to run for us. If that’s you, and you want to be part of a record-breaking marathon team, visit shootingstarchase.org.uk/vlm

Running into the record books

make every moment count

To donate go to shootingstarchase.org.uk/donate or call 01932 823100 5

More tea, Simon?Supported families were given VIP treatment at an exclusive afternoon tea this summer courtesy of The Dorchester and our Vice President, Simon Cowell.

Simon, who has hosted the event for Shooting Star Chase since 2012, was joined by Patron Lauren Silverman and a host of stars including fellow Patrons Dame Joan Collins and Laurence and Jackie Llewellyn-Bowen, plus friends of the charity including Julian Clary and Arlene Phillips.

Together they spent time chatting with the 12 children and their families, posing for photographs and signing autographs to make it a day to remember.

As well as an amazing afternoon tea, guests enjoyed a pick ‘n’ mix sweet cart, goody bags and non-alcoholic Shooting Star Chaser cocktails.

The families were also treated to a performance by Britain’s Got Talent star, Connie Talbot, who sang an acoustic version of ‘Somewhere over the rainbow’.

Simon Cowell said: “The Afternoon Tea is something I so thoroughly look forward to every year. It is such a special, warm day. It really is a tribute to all the children and their families, as well as Shooting Star Chase, that this is such an uplifting and unique event for all of us who are lucky enough to attend.”

Supported mum, Faye Nogombo, whose seven-year-old son, Caleb, was born extremely prematurely and has cerebral palsy, said: “It was such a fun day at The Dorchester and a totally new experience. We felt like mini celebrities dressing up to come here and having our photos taken! Caleb loved meeting Simon and it has been amazing to talk to all of the charity’s supporters and tell them our story, and how much Shooting Star Chase supports my family.”

Sandi, Guest Editor “This is such a wonderful treat for families and

helps create special memories. In my experience the families always enjoy getting dressed up, having a lovely afternoon tea and meeting celebrities.”

Day of luxury for “amazing” families Eight supported families were treated to a well-deserved day of luxury thanks to car dealer group, HR Owen, Bentley Surrey and The Medicine Garden in Cobham.

Bentley Surrey despatched eight brand new Bentayga SUVs to our hospices to whisk the families away in their very own chauffeur-driven vehicle. They were then taken for a private tea in The Dome within the walled garden, a former Victorian kitchen garden now restored and transformed into a hidden haven.

Peter Matthews, Bentley Surrey Brand Ambassador, said: “It was an honour for us at Bentley Surrey and HR Owen to spend the day with these incredibly brave children and their amazing families. Seeing their eyes light up when they first sat in the Bentaygas was a sight to behold – they loved having a luxury experience that they are rarely able to enjoy.”

Supported dad Peter and his son Michael were part of the group. Peter said: “It has been something really special for Michael. It’s great to have something like this as he goes through so much. He absolutely loved the car and it’s beautiful in the garden, it was lovely to be in a tranquil open space.”

Sandi, Guest Editor “One of the teenage boys who went on the trip talks

to me about it every time he sees me – he says it was one of his favourite days.”

News News

Let’s stay togetherShooting Star Chase is calling on supporters to give their consent to ensure we can continue to share our work with them, ahead of new regulations which could have a significant impact on the charity’s income and care service.

The general data protection regulation (GDPR) is a new EU law which comes into effect in May 2018. It is a fundamental change to the way supporter information is accessed and controlled, and could have a significant impact on our ability to share our work with supporters.

Although the final details of theregulation are still to be confirmed, we’re asking our supporters to act now to avoid a situation where wemight not be able to contact you inthe future.

To make the process as straightforward as possible, we have set up a website where supporters can give consent easily and quickly.

Visit shootingstarchase.org.uk/consent for more information orif you don’t have access to the internet, please call our Supporter Care Services team on 01932 823115.

Sandi, Guest Editor “We have a fantastic group of supporters who dedicate

many hours to support the charity. I see first-hand every day how much that support is appreciated by families, it’d be such a shame to lose touch with our incredible supporters because of these new rules, so please do act.”

Why I love Shooting Star Chase

Lynda Borthwick has been a volunteer for over five years, helping out at head office, our retail distribution centre and at events in the community.

“I admire the work and support Shooting Star Chase provides, not only to the children we care for in our hospices and at home, but to family and extended family members, staff and volunteers. I have seen Shooting Star Chase grow over the last 20 years to what it is now and thoroughly enjoy being a member of the volunteer team. Volunteering, for me, is a way of giving back to the community and a chance to meet new people.”

7To donate go to shootingstarchase.org.uk/donate or call 01932 823100

The Nimmo family have benefitted from our care service since 2005, but following two tragedies in the space of three years, Shooting Star Chase has been there for them more than ever before.At six months old, Daisy was diagnosed with life-limiting genetic disorder Costello Syndrome – a condition so rare that Daisy was one of only nine children in the UK to have it. The syndrome left Daisy with severe epilepsy, vision impairment, a catheter, a weakened heart, at greater risk of cancer and wheelchair bound. She also had intestinal failure which meant receiving all her nutrition and medications directly into her bloodstream.

Mum, Steph, recalls how she felt when her family were first offered support from Shooting Star Chase when Daisy was just a few months old: “Daisy required 24/7 care right from the beginning and with three other children aged seven, five and two, and none of our family nearby, we were absolutely desperate for help. Many people shudder at the thought of having to use a hospice for their baby, but it was a lifeline for us.”

Over the years, Daisy and her family enjoyed short breaks together at Christopher’s in Guildford and Daisy regularly stayed at Shooting Star House in Hampton. The family also benefitted from counselling, music and play therapy, and Hospice at Home support. But when Daisy’s dad, Andy, was diagnosed with advanced, incurable bowel cancer in November 2014 and died a year later, Shooting Star Chase’s care was more invaluable than the family could have ever imagined.

“Andy was really ill from the moment he was diagnosed and unable to

work, and Daisy needed around the clock care. So for a year I was looking after two really ill people, as well as my three other children. Having Shooting Star Chase on hand for support meant everything to us during this time. When I needed to go to appointments with Andy, the Hospice at Home team came over to be with Daisy, and if there were cancellations at the hospice they’d call and offer us extra nights.

“When it came to Andy’s last days at home, we put together a plan with Shooting Star Chase because I knew it would be too upsetting for Daisy to be in the house at the same time. When the day arrived, our key worker picked Daisy up and took her to the hospice for an emergency stay. Despite being unconscious the previous day, Andy raised his hand and tried to speak as she shouted goodbye – and died shortly after she left. That’s when I realised that he needed to know she was safe at the hospice in order to be free to leave us.

“Because of Shooting Star Chase, Daisy didn’t have to be at home when her daddy died and I was able to spend some precious time with my husband when we needed to the most. But little did we know that just over a year later, we’d be facing another tragedy as a family, and would need Shooting Star Chase more than ever.”

At the beginning of 2017, Daisy’s health had deteriorated significantly and she was rushed to hospital, where she was quickly moved to the intensive care unit and put on life support. Sadly, just 13 months after the family lost Andy, Daisy died at the age of 12, with her mum and her

three older siblings by her side.

“Daisy’s death was a huge shock and our lives as we knew it had changed once more. It was hugely important to us that we honour her last wish to be at home – so Sarah, our Hospice at Home nurse, set up a special cold mattress in Daisy’s bedroom and arranged with undertakers and the hospital team for Daisy’s body to be brought home. Her three siblings and I spent the night in her room with her, playing her favourite music and saying our goodbyes. The next day her body was transferred to Shooting Star House for one last sleepover.

“The children and I took great comfort from bringing Daisy back to the hospice – the nurses helped us dress her in her favourite Princess Anna from Frozen dress, we filled her bed with toys, put flowers in her hair and her big sister painted her nails. Our friends came to visit to say their quiet goodbyes in peace and it gave us all such comfort to have this special time alone with her. It allowed Daisy to be a little girl, not a patient attached to drips and tubes.

“The care team helped me with the funeral plans and I stayed in the parents’ flat upstairs, not having to worry about cooking meals. I could focus on Daisy and my older children. Just a few days after the funeral, Sarah was on the phone to check how I was doing and we were invited to our first Memory Day at Shooting Star House later in the year – where we hung a star on the memory tree and released a balloon to the sky for Daisy.

“Shooting Star Chase has walked with us every step of our journey. They cared for us as they had always promised, holding our hands at the end of Daisy’s life and helping us create happy memories that will last a lifetime. I can’t imagine how we would have coped without their support – after Daisy’s diagnosis, throughout her life, when Andy died and at the end of Daisy’s life. And we’re still getting their support in bereavement and finding a way forwards without Daisy and Andy.”

Family story

Daisy’s story “Shooting Star Chase has walked with us every step of our journey. They cared for us as they had always promised, holding our hands at the end of Daisy’s life.”

Family story

9To donate go to shootingstarchase.org.uk/donate or call 01932 823100

A day in the life / newsNews

In the last 13 years, the Shooting Star Chase Ball has raised an incredible £1.5 million. It’s the charity’s flagship fundraising event and sees 300 guests, including A-list stars, enjoying a glam night at The Dorchester. But what goes in to make the ball a huge success? Specialist Fundraiser, Georgina Goddard, explains.

“The planning of the ball actually starts more than a year before – the date for next year is already set – but the real planning starts about eight months before, when we begin sorting things like the entertainment, menu choices, invites, running order and sourcing auction prizes.

“The auction prizes are key to raising the income – we’re lucky enough to have been donated many money-can’t-buy prizes over the years. There’s often a fierce bidding war for the best prizes and our celebrity Patrons have been known to throw in spontaneous prizes on the night. Last year, we had a dress worn by Dame Joan Collins in Dynasty and on the night she also donated the jewellery she was wearing! And it’s not just money raised at the auction that’s incredible, one year a celebrity supporter auctioned a date with herself and she’s now married to the winning bidder and they have two children together!

“In the days before the event we’re really busy packing up all the

things we need, from 168 bottles of Prosecco to 80,000 crystals used to decorate the tables! One of our lovely volunteer drivers takes everything to the hotel the day before for us.

“The day itself is a long day – about 18 hours – but we’re so busy it flies by. We’re on site from 9am to dress the room and run through the entertainment. We always have live performances on the night – this year was our Vice President Tony Hadley – and as a bit of fun we have a surprise tribute act too. Last year, we had George Michael and so many people thought he was the real deal.

“In the afternoon the staff support team arrive, who help on the night with everything from auction spotting to press management. After final touches are done we get glammed up in the toilets! But being The Dorchester the toilets are very nice!

“The guests arrive at 7pm greeted by a red carpet and press photographers, with photos often gaining widespread coverage across national papers. After the drinks reception, dinner is served followed by the entertainment and auction and then it’s carriages at 1am. At about 2am staff go home for some much-needed sleep! And it doesn’t end there, afterwards we need to process all the payments, unpack all the boxes and then turn our attention to next year!”

A day in the life of a... Specialist Fundraiser

Stars join Schofe on the pullA host of stars including Holly Willoughby, Peter Jones, Frank and Christine Lampard, Leigh Francis and Tej Lalvani were on hand to support TV presenter Phillip Schofield as he hosted a Clay Pigeon Shoot in aid of Shooting Star Chase and the Peter Jones Foundation.

Phillip Schofield, a Patron for over 15 years, hosted the event with his wife Stephanie, and together they welcomed 100 guests to the Royal Berkshire Shooting School.

After enjoying a morning shooting session and ‘beat the pro’ competition, guests were treated to a three-course meal, before battling against each other for auction lots.

Highlights included an exclusive visit to the set of This Morning, the chance to cook alongside Gino D’Acampo during an actual dinner service at his restaurant and a week in a five-star ski chalet in Chamonix.

Speaking to guests during the lunch, Phillip Schofield said: “We had the blueprints on our kitchen table for the first hospice and everyone was so proud to see how amazing it was going to be. Every pound and penny we raise will support the team and the families at their worst possible time.”

Shooting Star Chase has two new shops to enable local residents to help support children and their families who live in the heart of their communities.

The new shops – on Devonshire Road in Chiswick, and Fulham Road in Fulham – are evidence of our drive to open more shops in our area to increase sustainable funding and continue caring for local children with life-limiting conditions.

Both shops will offer a boutique-style retail experience with high-quality, pre-loved clothes, toys, books, accessories and homeware. Stock will also include brand new products donated by our generous corporate supporters, plus the occasional

money-can’t-buy item from the wardrobe of celebrity patrons.

Ruth Shaw, Area Retail Manager for Shooting Star Chase, says: “As we receive very little financial support from the government, our shops are a key source of income for the charity. We are very much looking forward to offering shoppers the very best pre-loved items at excellent prices, and we’re equally excited and honoured to become part of the tight-knit communities of Chiswick and Fulham. We’ll be joining in local street parties and putting on our own community events such as fashion shows and children’s story time.

“Our supporters play a key role in the success of our shops. The quality

of the stock ultimately relies on the donations we receive, so we’re always grateful for donations of high-quality clothes, toys, books, accessories and homeware during opening hours. We also need volunteers to keep the shops open so we’d love to hear from anyone who’d like to offer a few hours a week to help out.” To support our shops in this way, please contact our volunteers team on 01932 823100.

Mrs Pinkypops says: “I don’t know what I’d do without Shooting Star Chase’s

charity shops – it’s where I get all my clothes! Find a shop near you at shootingstarchase.org.uk/shop”

“Lights, camera, action!” Teenagers supported by Shooting Star Chase got together with their peers from Hampton School as the school teamed up with the charity to host a special youth group.

The school, who are long-term supporters of the charity and have raised thousands of pounds over the last 15 years, wanted to get involved in a new way and offered their facilities and their friendship to our youth group.

Hosted at the school’s incredible Hammond theatre, the group of 13 enjoyed a private cinema night together, something which is difficult at a mainstream cinema due to the limited number of wheelchair spaces available. And to make the experience even better, Domino’s Pizza kindly donated pizzas for everyone as pre-film snacks.

Mark Nicholson, Assistant Headteacher at Hampton School,

said: “We were delighted to welcome the Teenage Youth Group to Hampton School for the pizza and film night. It was wonderful to see the group and our pupils getting on so well together and we hope to see them again soon.”

Sandi, Guest Editor“It was lovely to see our teenagers integrating with

the local school and both benefitting from the experience.”

To donate go to shootingstarchase.org.uk/donate or call 01932 823100

Two more reasons to shop

11To donate go to shootingstarchase.org.uk/donate or call 01932 823100

A look inside...Summer Fun DayUnder a different theme every year, our annual Summer Fun Day is a firm favourite with Shooting Star Chase families – with some even planning their summer holidays around it to ensure they can attend!

Held in the grounds of Christopher’s, the day offers supported children, siblings, parents and grandparents have-a-go stalls, arts and crafts, face painting, donkey rides, a look inside vintage and super cars, story and music workshops, yummy treats and animal encounters.

Originally, the Summer Fun Day was organised by a team of volunteers and it continues to heavily rely on them, both at the planning stage and on the day itself. Each year around 35 volunteers help to ensure the day is a success from start to finish – we couldn’t run it without them.

Summer Fun Day is totally free of charge to families and has been an annual fixture at the hospice for 14 years. The event enables children with life-limiting conditions and their families, who use both Christopher’s and Shooting Star House, the chance to meet other families and enjoy a fete-style day with activities for all abilities.

It’s also a day of fancy dress and always sees families pull out all the stops, donning some amazing creations. This year’s movie-themed event saw incredible outfits from families including The Wizard of Oz, Batman and The Addams Family.

Nicky, whose son George is supported at Christopher’s, said: “We plan our summer holidays around the Summer Fun Day, we love it so much!”

A look inside / news A day in the life

Louise Turpin, a nurse at our Hampton hospice Shooting Star House, explains what a typical day looks like for a nurse working at Shooting Star Chase.

“When we arrive for shift we’re allocated a child, who we’ll look after for the whole shift. On a long day I’ll start at 7am and work until 9pm so I’ll spend a lot of time with that child, doing a whole variety of activities.

“At the beginning of the day I will go through the child’s care plan and do a handover with staff from the night shift. After that I’ll get the child washed and dressed and give them breakfast or a feed. I’ll think of ideas of what activities I can do with the child that day and plan these around their feeds and medications.

“We’re lucky we have such wonderful facilities at the hospice so there’s a lot for us to do without even leaving the building. We might go swimming or spend some time relaxing in the sensory room, play in the garden or make some noise in the music room! Swimming is really popular with the children. We are able to get most of the children we care for into the hydrotherapy pool, which has great health benefits for them plus, with our state-of-the-art sound and lighting system, it’s a great place to relax and have fun. Families really

like their children to go swimming when they’re staying with us as it’s not something they can normally do anywhere else.

“After a morning activity we all sit down together for lunch – all the staff, volunteers and children staying or visiting that day. Even though some children are unable to eat, and are tube or peg fed instead, lunchtime is a time we’ll all be together and socialise – like a big family.

“In the afternoon we might go out for a walk to the local pond or river. One of my favourite trips was to Chessington, we took a group of children all with different conditions and abilities but we managed to get them all on a ride they enjoyed and had a lovely picnic together. That’s one of the big differences between a hospice and hospital – we get the children out and about when we can.”

Louise worked as a nurse in a hospital high-dependency unit before she began working at Shooting Star Chase in February. “I love it here because every day is different, everything is centred round the child and family and what they want to do. There’s a large range of ages of children we work with plus a huge variety of conditions and needs. Some days I am delivering respite care and other days end-of-life care.

“I feel like I’ve been able to maintain, and add to, my skillset here. We get great support from the Practice Education and Quality team and I’ve learnt new skills such as seizure management. A lot of the children have unique pieces of equipment and so we’re always refreshing our knowledge.

“At the end of the day we’ll have dinner together and then it’s time to wind down, maybe with some music or by watching a film before we do the bedtime routine and handover to night staff.

“I think for me the best thing about working at Shooting Star Chase is having the time and control to be able to shape the child’s care to do things they enjoy first and foremost, fitting their medical needs around their enjoyment, which is something you can’t do when working on a hospital ward.”

Professor Popplepants says: “I thought I was clever, but those nurses really do

know their stuff, and the children love them too. We’re always looking for more legendary nurses – see our website for details.”

Why I love Shooting Star Chase

Philip GlenisterPatron

“It is an honour to be a Patron of Shooting Star Chase. I have seen at first hand the difference the charity makes to the children and families and it is always a pleasure to pledge my support wherever and whenever I can.”

A day in the life of a... hospice nurse

Makaton awardShooting Star Chase has become one of only three children’s hospices in the country to be recognised by The Makaton Charity as Makaton Friendly.

The scheme rewards organisations for effectively using the language programme to provide an accessible, supportive and welcoming environment for those with learning and communication difficulties.

A sign of Shooting Star Chase’s commitment to Makaton is our established Makaton Friendly group called Friendly Hands! Every month, Deborah Green, Volunteer Speech and Language Therapist at Shooting Star Chase, and Sarah Hodkinson, Lead Therapist at Shooting Star Chase, put on sessions for staff, children and parents to learn and revise key Makaton signs and perform them to music. The sessions are filmed and uploaded to our website, giving access to parents to help use Makaton at home.

In addition, we have introduced Makaton symbols and line drawings around both hospices, used Makaton at our staff conference and have plans for a Makaton-themed member of our charity characters, The Friendlies!

“It is fantastic to be officially recognised as Makaton Friendly,” says Sarah. “Many of the children supported by Shooting Star Chase are unable to communicate effectively, which is why we strive to use Makaton across the charity wherever possible to help us interact and provide a wholly inclusive and welcoming environment.”

13To donate go to shootingstarchase.org.uk/donate or call 01932 823100

Family story

“I am a Shooting Star Chase mum. A few years ago, that would have meant very little to me. Today, it means I belong to a group of parents with a child with a life-limiting condition and we will probably have to say goodbye to our children way too early. “But it also means we are very lucky. Shooting Star Chase is helping us make beautiful memories along the way and, when the time comes, we won’t be alone.”

Tanja and husband Omar are parents to Max, four, and Amelie, six. “When Max was born, we soon realised that something wasn’t right,” explains Tanja. “He was floppy, lethargic, poorly and unresponsive. Things quickly went from bad to worse. Max spent his first year on the edge of life, he was not expected to survive.”

Max has severe combined immunodeficiency, which causes a weak immune system, making it extremely difficult to battle viruses, bacteria and fungi that cause infections. “It is hard to explain what happened to us in this time. Max’s sister was only two and my husband and I had no family or support nearby. It was ripping us apart. We were not coping with the lack of sleep and suddenly living between paediatric intensive care units and hospital wards, while taking care of Max’s sister as my husband went back to work. It was a terrible time. It took us down a very dark road.

“When Max was five months old, a lovely doctor referred Max to Shooting Star Chase. Initially that was a blow. Although we knew Max was very poorly, this was accepting that Max could die. Even more so,

it was saying out loud that Max would not survive, that eventually, whatever he had would get the better of him and rip him out of our hands.

“At first I was against it. I was scared. But then we met a lovely nurse from Shooting Star Chase. She met us at hospital and she listened, asked me how I was and how we were coping. It felt like a huge rock falling off my shoulders – somebody cared. She was going to help us with it all and support us. And even if we would have to let Max go, she would be there and support us through it. I can’t quite express what this was like. Suddenly, I wasn’t so scared anymore. I wasn’t going to be alone with all of this. In the coming months, she helped us get some sleep. She came and looked after Max, so I could play with his sister, Amelie, or just have some rest. We talked on the phone and she helped us to deal with everything.”

At nine months, Max was ‘stable’ for the first time. “Max was able to come home – finally. He was fragile and his health was volatile. To be honest, I was scared to go home. Scared I wouldn’t cope. What if he died on me? It was tough. We stayed at the hospice for our first week away from the hospital. Max was taken care of by the superb team and we could rest. I slept for the best part of two days. We were safe and it was time to recharge our batteries ready to go home to the reality of sleepless nights and permanent worries. “Having a life-limited child with complex care needs brings many challenges. The lack of sleep is only a very small part of it. We worry a lot and we try to give Amelie as normal a life as possible. We struggle to keep

our little family going, to pretend everything is okay. We struggle to make it to all of Max’s appointments while taking care of his therapies, his medications and his social needs. We struggle with Max’s physical disabilities and the boundaries this brings with it. We struggle with the responsibility on our shoulders and the fear that comes with it. The truth is we can’t do it on our own.

“Max is suffering from several life-limiting conditions but, with the help of Shooting Star Chase, we are managing. Shooting Star Chase is so much more than just end-of-life care; it is our hub, our safe space. We can meet up with other families in the same situation, talk about how we feel and give each other support. We have a Hospice at Home nurse who is there for us. She helps me when I am not coping, she listens, writes letters, attends difficult meetings with me or simply comes to my rescue. She gives me advice when I have questions.

“Our daughter goes to siblings’ days and now knows other children in a similar situation. They have fun and have a space to talk about their siblings and how they feel. And, on top of that, Shooting Star Chase offers us respite. This means sleeping through the night from time to time or spending a day with our daughter, going someplace where the wheelchair or Max’s needs do not allow us to go.

“The team at Shooting Star Chase has a unique understanding of our situation. They accompany us on our journey, help us to make happy memories and be ready for when the time comes to say goodbye. There are numerous other respite centres for special needs’ children in Guildford, but Max’s complex care needs do not allow us to send him to those. It is a sanctuary, our little island of happy. We come here as a family and enjoy some happy hours, make memories and forget what is to come. We have learned to take it one day at a time and I cannot thank Shooting Star Chase enough.”

Max’s story“Shooting Star Chase is so much more than just end-of-life care; it is our hub, our safe space.”

Family story

15To donate go to shootingstarchase.org.uk/donate or call 01932 823100

Feature Feature

Key moments define family life. And when a family has a child with a life-limiting condition, these moments are pushed to the extreme. Some are devastating moments no parent ever wants to experience, like being told your child has a life-limiting condition. “We had a meeting with the neurologist who said his condition was so rare that she’d had to research it herself,” says Sarah, mum to Kyffin. “She then proceeded to tell us that in the worst-case scenario, Kyffin would never walk or talk, never use his hands or be able to sit, and may need to be ventilated. She concluded by saying his long-term prognosis would depend on him making it through the next few months. It was the worst moment of my life.”

Mum Zainab and dad Ali had a similar experience. “We attended a meeting at hospital to discuss concerns about Adnan’s development “We were hoping things would be OK but when we walked into the room there were three people sitting there, and immediately I knew they were there

to deliver bad news. We had loads of questions but didn’t say a single thing. We just wanted to get out of the room. Ali and I drove in silence for a bit, then Ali said we should stop to talk. We just broke down in tears. The moment of realisation that our child had such a short life expectancy just hit us. How can you imagine that your child will have a really short life?”

These are just two examples of the devastating moments families supported by Shooting Star Chase have to endure. And that’s a key part of why Shooting Star Chase exists – providing the very best care from diagnosis to end of life and in bereavement. But our care is not just about supporting families through the heartbreaking moments, but also about providing a range of services and activities to create precious moments families will cherish.

This Christmas, we’re launching a campaign to help supporters buy a gift to give children with life-limiting conditions, and their families, a

moment they will never forget.

We have selected a range of services that can be bought as part of our brand new range of virtual gifts, which allow supporters to help in a more personal way, selecting an activity or special moment for a family who rely on a specific part of our care service. Every time you buy a gift online you’ll receive a downloadable certificate explaining the benefit of your gift, which you can pass on if you’re buying the gift for a supported family in lieu of a present for a relative or friend. There’ll also be a range of gift cards available to purchase from our shops and at events throughout the community.

Buying a gift from the range will allow Shooting Star Chase to continue to provide the services that make a huge difference to families, and ensure you know how your generosity is being used. When you have a child with a life-limiting condition, every moment counts. Please help us to make those moments precious and unforgettable.

The moment you’ll never forgetThese are just some of the special moments you can buy to provide invaluable support to the families we care for. See more gifts and buy online at shootingstarchase.org.uk/moments or call 01932 823115.

Creating a memory box

£30

When time is short, creating memories becomes even more important. Memory boxes are a key part of giving families a moment they’ll never forget. Our qualified care team use memory boxes in a number of ways, such as helping families collect precious memories in one place, or to help siblings capture their favourite memories of their brother or sister, which can be a focal point of therapy sessions in the future.

“The team helped us create memories and keepsakes – hand and footprints, photos, casts, finger and thumbprints and a lock of hair. We treasure them all and they help keep Orla’s memory alive.” Helen, Orla’s mum.

Precious time in the sensory room

£20

Equipped with a range of specialist facilities including musical floors, fibre optics, mirrors, lights, bubble tubes and water beds, these unique rooms are incredibly popular and adaptable to a range of conditions. They can help relax and sooth and they provide a stimulating environment supporting non-verbal communication.

“Nathan was deaf and he didn’t really do taste because he couldn’t have solid food, so his eyesight was almost everything and the sensory room was amazing for him. He used to look at the lights – they made him laugh – and he liked the sensations of the water in the mattress. It was his way of exploring the senses.” Alexia, Nathan’s mum.

Family session in the hydrotherapy pool

£35

Many families find it difficult to use public swimming pools, so our hydrotherapy pools are a safe space for families to create special memories. For some, it is the first time they have been able to take their child swimming, overcoming concerns that they were unable to go into water because of complex needs such as a tracheostomy (an opening to allow a tube in the neck to enable breathing). Thankfully our staff are fully trained to make this common family activity possible for families supported by Shooting Star Chase. Hydrotherapy also provides physical benefits such as helping muscle tone and strength, enabling mobility not possible out of water, and relieving pain and inflammation in joints.

Music therapy session

£50

Music therapy gives children an opportunity to communicate in new and profound ways, particularly as many we care for are unable to speak and struggle to express themselves and their feelings in a safe environment. Sessions are often recorded to give families precious keepsakes.

“I believe that without music therapy, our experience of having a life-limited child would have been completely different, and far poorer. We watched our beautiful non-verbal little girl find a special way of communicating. Not only did she learn to interact with the music itself, but also with those of us taking part in the session with her.” Anna, Lydia’s mum.

Shooting Star Chase is launching a new campaign to enable supporters to provide special moments families can cherish forever.

We aim to provide the actual service gift you have bought. In some instances it may not be appropriate to deliver this service, and so we may provide a different service gift to ensure the family receives a precious moment relevant to their specific needs.

17To donate go to shootingstarchase.org.uk/donate or call 01932 823100

16-year-old Josh was fit, sporty and unassuming. He’d had no significant health concerns, until one day the family’s world came crashing down. Mum Caroline shares their story.“Josh had a great capacity to make lots of friends,” says Caroline. “But he also showed maturity far beyond his years – he was like a wise old man! He had been my bundle of joy from the moment he was born and I was always excited about seeing him develop and working out what he wanted to do in life.

“But then our world came crashing down. It started innocently enough when Josh said his back was hurting. He couldn’t recall an injury playing football or tennis – two of his loves – so I took him to a doctor, who dismissed it as growing pains. We arranged for a blood test just to make sure, and that came back fine, but I did have this lingering worry because Josh very rarely complained about anything.

“A few days later, Josh was staying at his dad’s when he called me very distraught. He told me he’d found a lump in his groin and was convinced he’d got cancer. I reassured him – I think my exact words were ‘don’t be silly’ – but we went to see our regular doctor, who had been away on holiday on our previous visit. He examined Josh and I’ll never forget the look of concern on his face when he pulled back the curtain to speak to me. We were transferred to hospital where Josh was hastily taken through numerous tests and MRI scans. Within a few days, we were given the horrendous news that Josh had Clear Cell Sarcoma. It is a very rare form of cancer – so rare that it does not show up in routine blood tests. Worst of all, we

were told Josh had weeks or, at best, months to live. In that moment our lives changed for ever.

“Josh needed a back operation immediately as his spine was crumbling from the cancer. During that excruciating procedure further tumours were found growing around his stomach area. We were told his cancer was already at level four and the plan was to give him chemotherapy and radiotherapy to help reduce the level to allow us to take him to United States for pioneering treatment. Unfortunately we never got to that point.

“Our experience in hospital was becoming increasingly worse – at one stage Josh was bleeding quite badly and his dad and I were left to physically try to stop it ourselves. We didn’t feel we were getting the right support and were at breaking point. At that point a good friend of mine who knew of Shooting Star Chase said we needed their vital support.

“Josh and I were taken by ambulance to the hospice. The moment we arrived at the hospice everything changed. We were given a lovely room, and the atmosphere, support and warmth resonated from every area of the building. The surroundings at the hospice are beautiful, with such incredible attention to detail and care beyond words. It was such a comfort to us. Josh made friends with other children being cared for by the hospice and the family accommodation gave me the chance to catch up on some much needed sleep, knowing he was being looked after by the care team. I had barely slept in weeks and they almost dragged me upstairs to get some rest, but they were doing it because their support goes beyond the medical care for the child; they look after the whole family.

“We managed to take Josh home for Christmas Day but were back a few days later because he was deteriorating quite quickly. Just before New Year’s Eve we were told

Josh would likely pass away by the end of the week. He was drifting in and out of consciousness, and despite courageously rallying a couple of times, he passed away a few days later surrounded by his dad, his sister Ellie and myself.

“Although it was an experience too painful to explain, Shooting Star Chase made it the best it could be. They were amazing. They genuinely feel your pain and go out of their way to help. I will always be grateful to Shooting Star Chase for the way they cared for Josh and our family. The support continued after Josh’s funeral. I benefitted from counselling sessions, which is part of the charity’s bereavement service. They helped me work through the various stages of grief, the denial and anger which is common for a parent when their child has died.

“Looking back I can’t imagine what would have happened to us if we didn’t have the support of Shooting Star Chase in those last few weeks. It’s scary to even think about it. In that sense we were lucky because we know not everyone gets that support. We now hold an annual fundraising day to allow Shooting Star Chase to support other families who find themselves in the same position as us. We can only do so much, however, so I want to thank the charity’s supporters for everything they do to keep the care service running. It meant so much to my family, and will for many others.

“Josh taught me so much with his courage and dignity during this horrible disease. He didn’t once complain. He brought so much to everyone he met and continues to – he taught me how to carry on with my life and not to give up. Josh was and always will be my inspiration. He leaves behind an amazing legacy.”

Family storyFamily story

Josh’s story“Although it was an experience too painful to explain, Shooting Star Chase made it the best it could be. They were amazing.”

19To donate go to shootingstarchase.org.uk/donate or call 01932 823100 19

Fabulousfundraisers

Over to you

Record breaking Sunrise Walk A record number of Sunrise Walkers turned out in force to help raise a huge £81,600 for bereaved families supported by Shooting Star Chase. For the fifth year running, Ham House welcomed the early risers taking on our flagship event. The 415 walkers began the 10km and 20km routes at 4.30am in time to watch a stunning sunrise. After the walk participants celebrated their achievements at a post-walk picnic with their family and friends.

Legacy Afternoon TeaLeaving a gift in your will can make a lasting difference long after your lifetime. Join us for our Legacy Afternoon Tea on Thursday 9th November at Shooting Star House, our Hampton hospice, to find out more about the care we provide and how your support can make a huge difference to children and families who rely on our help. For more information or to book your place contact Katie on 01932 823109 or katie.wallman@shootingstarchase.org.uk.

A different way to donate Making a donation to our charity shops gives you the opportunity to free up some space, show your charitable side and help us to make every moment count for the families we support. Our shop managers are experts at spotting the latest trends and quality vintage or designer pieces to ensure our shops are full of lovely things. Even if we can’t sell your items, rags make us money too! Take a look at our wish list online and see what sorts of donations we’d love at shootingstarchase.org.uk/shop.

Maintenance and housekeeping volunteersAre you an excellent cleaner or a DIY whizz with spare time on your hands? We’re looking for housekeeping and maintenance volunteers. Our housekeeping volunteers help staff maintain a high standard of cleanliness at our hospices, making sure they’re a home from home. Meanwhile our maintenance volunteers assist the maintenance team with DIY, decorating and the general upkeep of our hospices, head office and shops. Find out more and apply at shootingstarchase.org.uk/volunteer.

Little Tikes are big stars

New corporate supporters MGA Entertainment helped bring some joy with their recent Little Tikes toys donation. Following a visit to one of our hospices, they immediately recognised that many of the garden toys were out of date and fully kitted out our hospices with cozy coupe cars, slides, playhouses and toys. In addition to this they have donated brand new Little Tikes products and Zapf Creation dolls for us to sell through our charity shops to raise vital funds.

Theatre group are the Biz

The Biz Theatre Group continued their support of Shooting Star Chase at their 12th show this summer. Over the last 12 years, the young people’s theatre group has raised an amazing £34,391 for the charity! As well as holding bucket collections in the lead-up to the performances and donating all profits from the shows, the cast delighted the children at Christopher’s, our Guildford hospice, with an exclusive sneak preview of their show, Hairspray.

Asian adventure

Young adventurer Tasha Howard embarked upon an epic 4,500km bike ride, along the length of Japan and South Korea to raise £773. The route proved testing with mountains, a cyclone, a landslide and 40°C heat to overcome. Tasha said: “Shooting Star Chase have been an incredible support to a dear friend. I hope my challenge might inspire others to get out there and have an adventure, and support Shooting Star Chase too.”

Angling for success

Gerrards Cross and Uxbridge Angling Society showed their support at their annual charity fishing match recently. The club, who have been supporting Shooting Star Chase since 2010, have raised nearly £25,000 through their efforts so far. All the fishermen taking part in the event are sponsored by their friends and family and, despite there not being an abundance of fish caught on the day, they raised a fantastic £3,540.

Take on a tandem skydive!Fancy a thrill for an amazing cause? Why not take on a challenge of a lifetime with a tandem skydive. The easiest and most popular of all skydives, it only requires 30 minutes of training before you can take to the skies strapped to your instructor. With jump sites across the UK, you just need to choose your preferred date and location. So jump to it and visit shootingstarchase.org.uk/skydive to find out more details.

Gifts in celebrationGiving a gift in celebration is the perfect way to make your celebration extra special. Whatever the occasion – birthday, wedding, anniversary or even baptism, graduation or retirement – celebrate it with friends and, instead of receiving gifts, ask for donations to Shooting Star Chase. Your celebration can make a meaningful difference to the children and families we support. Find out how you can help atshootingstarchase.org.uk/celebration.

Spread the wordDid you know we have a group of lovely volunteers who act as ambassadors for Shooting Star Chase, helping to spread awareness throughout the community? From school children to Rotarians and WI members to Scouts, our ambassadors deliver hundreds of talks every year. If your school, club or organisation could host one of our ambassadors to tell you more about all the fun ways you could support us, get in touch with Jane De Lay on 01932 823100.

Ways you can make every moment count

A small selection of the amazing things you’ve done

Werth show their worth

Thanks to the generosity of the Werth Trust, set up in honour of Lawrence Werth, who died in 2014, our hospices are both benefitting from some new furniture and equipment to make them even more of a home from home for families. The £25,000 gift will fund new sofas and soft furnishings at Christopher’s as part of its refurbishment and purchase a basket swing for our Hampton hospice, allowing children to have fun in our outdoor space.

19To donate go to shootingstarchase.org.uk/donate or call 01932 823100

Santa SkywalkChannel your inner Santa as you climb and zip through the trees in this exhilarating adventure. Saturday 2nd December 2017 – from 11amSkywalk Adventure, Esher, Surreyshootingstarchase.org.uk/santaskywalk

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