Winter 2017
Shinethe Shooting Star Chase magazine
The moment you’ll never forget Help us give families precious and unforgettable moments
London Marathon team break records
Families become VIPs at afternoon tea
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. Shine Winter 2017 News Welcome to Shine! Highlights inside She began as outreach team leader, News with no other staff in the team, 3 Running into the record books and recruited the first members 4 More tea, Simon? of staff to support families in the 8 Two more reasons to shop community. From that initial team 9 A day in the life of a... Specialist of just three people, Sandi now Fundraiser manages a team of 50 nurses and 10 Makaton award care assistants working in-house 10 A look inside… Summer Fun Day at Shooting Star House and across Shooting Star Chase’s entire Hospice at Home team. Family stories Welcome to the winter 2017 edition 6 Daisy’s story of Shine, which aims to show how “It’s been a privilege supporting 12 Max’s story your support helps Shooting Star families through the most 16 Josh’s story Chase make every moment count for unimaginable circumstances over babies, children and young people the last 12 years,” says Sandi. “I’ve with life-limiting conditions, and their been very lucky to work with an Feature families. amazing team of staff and it’s been 14 The moment you’ll never forget an honour to be able to support the Our guest editor this edition is Sandi families we look after. Knowing we Hillery, Head of Care at Shooting Star can make a difference to families at Your Shooting Star Chase House, our Hampton hospice. the worst possible time makes this 18 Fabulous fundraisers job so rewarding. I’ve met so many 19 Over to you When Sandi first joined the charity in incredible children and families over May 2005, the hospice wasn’t even the years and I will miss everyone open and now, after 12 years leading when I leave.” the team at Shooting Star House, Sandi is retiring. Sandi Running into the record books Shooting Star Chase’s team for the Westminster, where the awesome place choosing to run for us. If that’s Virgin London Marathon in 2017 team was greeted by their families, you, and you want to be part of a achieved not one but two records for staff and volunteers with a big cheer, record-breaking marathon team, visit And the charity. The team of 82 runners a celebratory drink, a massage and shootingstarchase.org.uk/vlm Care we have provided in was the largest team in the charity’s a hot meal. The refreshments at the money marathon history, and between reception were kindly donated by raised them they have raised £250,000 for corporate supporters Fuller’s, Pelican the last six months our care service, breaking the record Procurement and Les Caves Pyrene. Care figures cover April 2017 to September 2017. so far in amount raised for any previous 2017/18 marathon. Supported dad, Ali Najefi, who ran 3,570 hours of Hospice at the marathon with his brother-in- Home visits £3.4m The team was made up of four law and a friend said: “I did this for 4,146 in Oct 16 to Mar 17 bereaved parents, 28 runners my son, Adnan. He goes to day care Supported 681 1,672 Against a target of £3.3m in Apr 17 to with a connection to one of our and we stay over at the hospice for families bednights Aug 17 supported families, 18 runners from a break, and they’ve been so good 690 in Oct 16 to Mar 17 1,539 in Oct 16 to Mar 17 corporate partners and several local to us. We’re all proud to do this for supporters, and they were cheered Shooting Star Chase today – it’s nice on by three teams at different to be able to give something back.” locations on the 26-mile course. The Virgin London Marathon is our As a thank-you to runners, most valuable challenge event of Shooting Star Chase held a post- the year, and crucial to that income race reception at Central Hall in is people with their own marathon
Shooting Star Chase, Bridge House, Addlestone Road, Surrey, KT15 2UE t 01932 823100 f 01932 858399 e [email protected] w shootingstarchase.org.uk sschospices make every moment count ToRegistered donate goCharity to shootingstarchase.org.uk/donate No: 1042495 or call 01932 823100 3 News News Let’s stay together Shooting 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 the More tea, Simon? regulation are still to be confirmed, we’re asking our supporters to act Why I love Shooting Supported families were given VIP Simon Cowell said: “The Afternoon Day of luxury for now to avoid a situation where we treatment at an exclusive afternoon Tea is something I so thoroughly Star Chase might not be able to contact you in tea this summer courtesy of The look forward to every year. It is such the future. Dorchester and our Vice President, a special, warm day. It really is a “amazing” families Simon Cowell. tribute to all the children and their families, as well as Shooting Star To make the process as Eight supported families were Supported dad Peter and his son Simon, who has hosted the event for Chase, that this is such an uplifting straightforward as possible, we have treated to a well-deserved day of Michael were part of the group. Shooting Star Chase since 2012, was and unique event for all of us who set up a website where supporters luxury thanks to car dealer group, Peter said: “It has been something joined by Patron Lauren Silverman are lucky enough to attend.” can give consent easily and quickly. HR Owen, Bentley Surrey and The really special for Michael. It’s great and a host of stars including fellow Medicine Garden in Cobham. to have something like this as he Patrons Dame Joan Collins and Supported mum, Faye Nogombo, Visit shootingstarchase.org.uk/ goes through so much. He absolutely Laurence and Jackie Llewellyn- whose seven-year-old son, Caleb, consent for more information or Bentley Surrey despatched eight loved the car and it’s beautiful in Bowen, plus friends of the charity was born extremely prematurely and if you don’t have access to the brand new Bentayga SUVs to our the garden, it was lovely to be in a including Julian Clary and Arlene has cerebral palsy, said: “It was such internet, please call our Supporter Lynda Borthwick has been a hospices to whisk the families away tranquil open space.” Phillips. a fun day at The Dorchester and a Care Services team on 01932 823115. volunteer for over five years, in their very own chauffeur-driven totally new experience. We felt like helping out at head office, our vehicle. They were then taken for a Sandi, Guest Editor Together they spent time chatting mini celebrities dressing up to come retail distribution centre and at private tea in The Dome within the “One of the teenage boys with the 12 children and their here and having our photos taken! Sandi, Guest Editor events in the community. walled garden, a former Victorian who went on the trip talks families, posing for photographs and Caleb loved meeting Simon and it “We have a fantastic group kitchen garden now restored and to me about it every time he sees me “I admire the work and support signing autographs to make it a day has been amazing to talk to all of the of supporters who dedicate transformed into a hidden haven. – he says it was one of his favourite Shooting Star Chase provides, not to remember. charity’s supporters and tell them many hours to support the charity. days.” I see first-hand every day how only to the children we care for Peter Matthews, Bentley Surrey our story, and how much Shooting in our hospices and at home, but much that support is appreciated by Brand Ambassador, said: “It was As well as an amazing afternoon tea, Star Chase supports my family.” to family and extended family guests enjoyed a pick ‘n’ mix sweet families, it’d be such a shame to lose an honour for us at Bentley Surrey touch with our incredible supporters members, staff and volunteers. cart, goody bags and non-alcoholic Sandi, Guest Editor and HR Owen to spend the day because of these new rules, so I have seen Shooting Star Chase Shooting Star Chaser cocktails. “This is such a wonderful grow over the last 20 years to with these incredibly brave children please do act.” treat for families and what it is now and thoroughly and their amazing families. Seeing The families were also treated to a helps create special memories. In enjoy being a member of the their eyes light up when they first performance by Britain’s Got Talent my experience the families always volunteer team. Volunteering, sat in the Bentaygas was a sight to star, Connie Talbot, who sang an enjoy getting dressed up, having a for me, is a way of giving back to behold – they loved having a luxury acoustic version of ‘Somewhere over lovely afternoon tea and meeting the community and a chance to experience that they are rarely able the rainbow’. celebrities.” meet new people.” to enjoy.”
To donate go to shootingstarchase.org.uk/donate or call 01932 823100 5 Family story Family story The Nimmo family work, and Daisy needed around three older siblings by her side. the clock care. So for a year I was have benefitted from looking after two really ill people, “Daisy’s death was a huge shock and as well as my three other children. our lives as we knew it had changed our care service since Having Shooting Star Chase on hand once more. It was hugely important 2005, but following two for support meant everything to us to us that we honour her last wish to during this time. When I needed to be at home – so Sarah, our Hospice tragedies in the space go to appointments with Andy, the at Home nurse, set up a special cold of three years, Shooting Hospice at Home team came over mattress in Daisy’s bedroom and to be with Daisy, and if there were arranged with undertakers and the Star Chase has been cancellations at the hospice they’d hospital team for Daisy’s body to be call and offer us extra nights. brought home. Her three siblings and there for them more I spent the night in her room with than ever before. “When it came to Andy’s last days at her, playing her favourite music and home, we put together a plan with saying our goodbyes. The next day At six months old, Daisy was Shooting Star Chase because I knew it her body was transferred to Shooting diagnosed with life-limiting genetic would be too upsetting for Daisy to be Star House for one last sleepover. disorder Costello Syndrome – a in the house at the same time. When condition so rare that Daisy was one the day arrived, our key worker picked “The children and I took great of only nine children in the UK to Daisy up and took her to the hospice comfort from bringing Daisy back to have it. The syndrome left Daisy with for an emergency stay. Despite being the hospice – the nurses helped us severe epilepsy, vision impairment, unconscious the previous day, Andy dress her in her favourite Princess a catheter, a weakened heart, at raised his hand and tried to speak Anna from Frozen dress, we filled greater risk of cancer and wheelchair as she shouted goodbye – and died her bed with toys, put flowers in her bound. She also had intestinal shortly after she left. That’s when I hair and her big sister painted her failure which meant receiving all her realised that he needed to know she nails. Our friends came to visit to say nutrition and medications directly was safe at the hospice in order to be their quiet goodbyes in peace and into her bloodstream. free to leave us. it gave us all such comfort to have this special time alone with her. It Mum, Steph, recalls how she felt allowed Daisy to be a little girl, not a when her family were first offered patient attached to drips and tubes. support from Shooting Star Chase when Daisy was just a few months “The care team helped me with the old: “Daisy required 24/7 care right funeral plans and I stayed in the from the beginning and with three parents’ flat upstairs, not having to other children aged seven, five and worry about cooking meals. I could two, and none of our family nearby, focus on Daisy and my older children. we were absolutely desperate for Just a few days after the funeral, help. Many people shudder at the Sarah was on the phone to check how thought of having to use a hospice for I was doing and we were invited to their baby, but it was a lifeline for us.” “Because of Shooting Star Chase, our first Memory Day at Shooting Star Daisy didn’t have to be at home House later in the year – where we Over the years, Daisy and her family when her daddy died and I was hung a star on the memory tree and enjoyed short breaks together at able to spend some precious time released a balloon to the sky for Daisy. Christopher’s in Guildford and Daisy with my husband when we needed regularly stayed at Shooting Star to the most. But little did we know “Shooting Star Chase has walked House in Hampton. The family also that just over a year later, we’d be with us every step of our journey. benefitted from counselling, music facing another tragedy as a family, They cared for us as they had always and play therapy, and Hospice at and would need Shooting Star Chase promised, holding our hands at the Daisy’s story more than ever.” end of Daisy’s life and helping us Home support. But when Daisy’s dad, Andy, was diagnosed with create happy memories that will advanced, incurable bowel cancer At the beginning of 2017, Daisy’s last a lifetime. I can’t imagine how “Shooting Star Chase has walked with us every in November 2014 and died a year health had deteriorated significantly we would have coped without their step of our journey. They cared for us as they later, Shooting Star Chase’s care was and she was rushed to hospital, support – after Daisy’s diagnosis, more invaluable than the family where she was quickly moved to the throughout her life, when Andy had always promised, holding our hands at the could have ever imagined. intensive care unit and put on life died and at the end of Daisy’s life. end of Daisy’s life.” support. Sadly, just 13 months after And we’re still getting their support “Andy was really ill from the moment the family lost Andy, Daisy died at in bereavement and finding a way he was diagnosed and unable to the age of 12, with her mum and her forwards without Daisy and Andy.”
To donate go to shootingstarchase.org.uk/donate or call 01932 823100 7 News A day in the life / news Two more reasons to shop Stars join Schofe on the pull A 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 A day in the life of a... hosted a Clay Pigeon Shoot in aid of Shooting Star Chase and the Peter Specialist Fundraiser Jones Foundation.
Phillip Schofield, a Patron for over things we need, from 168 bottles of Shooting Star Chase has two new money-can’t-buy item from the of the stock ultimately relies on 15 years, hosted the event with his In the last 13 years, the Shooting Star Prosecco to 80,000 crystals used to shops to enable local residents wardrobe of celebrity patrons. the donations we receive, so we’re wife Stephanie, and together they Chase Ball has raised an incredible decorate the tables! One of our lovely to help support children and their always grateful for donations of welcomed 100 guests to the Royal £1.5 million. It’s the charity’s flagship volunteer drivers takes everything to families who live in the heart of their Ruth Shaw, Area Retail Manager for high-quality clothes, toys, books, Berkshire Shooting School. fundraising event and sees 300 the hotel the day before for us. communities. Shooting Star Chase, says: “As we accessories and homeware during guests, including A-list stars, enjoying receive very little financial support opening hours. We also need After enjoying a morning shooting a glam night at The Dorchester. The new shops – on Devonshire Road from the government, our shops volunteers to keep the shops open session and ‘beat the pro’ But what goes in to make the ball a “The day itself is a long day – about in Chiswick, and Fulham Road in are a key source of income for the so we’d love to hear from anyone competition, guests were treated to huge success? Specialist Fundraiser, 18 hours – but we’re so busy it Fulham – are evidence of our drive charity. We are very much looking who’d like to offer a few hours a a three-course meal, before battling Georgina Goddard, explains. flies by. We’re on site from 9am to to open more shops in our area to forward to offering shoppers the very week to help out.” To support our against each other for auction lots. dress the room and run through the increase sustainable funding and best pre-loved items at excellent shops in this way, please contact our “The planning of the ball actually entertainment. We always have live continue caring for local children prices, and we’re equally excited volunteers team on 01932 823100. Highlights included an exclusive visit starts more than a year before – the performances on the night – this year with life-limiting conditions. and honoured to become part of the to the set of This Morning, the chance date for next year is already set – was our Vice President Tony Hadley – tight-knit communities of Chiswick Mrs Pinkypops says: “I don’t to cook alongside Gino D’Acampo but the real planning starts about and as a bit of fun we have a surprise Both shops will offer a boutique-style and Fulham. We’ll be joining in local know what I’d do without during an actual dinner service at his eight months before, when we begin tribute act too. Last year, we had retail experience with high-quality, street parties and putting on our own Shooting Star Chase’s restaurant and a week in a five-star sorting things like the entertainment, George Michael and so many people pre-loved clothes, toys, books, community events such as fashion charity shops – it’s where I get all ski chalet in Chamonix. menu choices, invites, running order thought he was the real deal. accessories and homeware. Stock shows and children’s story time. my clothes! Find a shop near you at and sourcing auction prizes. will also include brand new products shootingstarchase.org.uk/shop” Speaking to guests during the “In the afternoon the staff support donated by our generous corporate “Our supporters play a key role in the lunch, Phillip Schofield said: “We “The auction prizes are key to raising team arrive, who help on the night supporters, plus the occasional success of our shops. The quality had the blueprints on our kitchen the income – we’re lucky enough to with everything from auction spotting table for the first hospice and have been donated many money- to press management. After final everyone was so proud to see how can’t-buy prizes over the years. touches are done we get glammed amazing it was going to be. Every There’s often a fierce bidding war up in the toilets! But being The pound and penny we raise will for the best prizes and our celebrity Dorchester the toilets are very nice! “Lights, camera, action!” support the team and the families Patrons have been known to throw at their worst possible time.” in spontaneous prizes on the night. “The guests arrive at 7pm Teenagers supported by Shooting Hosted at the school’s incredible said: “We were delighted to welcome Last year, we had a dress worn by greeted by a red carpet and press Star Chase got together with their Hammond theatre, the group of the Teenage Youth Group to Hampton Dame Joan Collins in Dynasty and photographers, with photos often peers from Hampton School as the 13 enjoyed a private cinema night School for the pizza and film night. It on the night she also donated the gaining widespread coverage across school teamed up with the charity to together, something which is difficult was wonderful to see the group and jewellery she was wearing! And it’s national papers. After the drinks host a special youth group. at a mainstream cinema due to our pupils getting on so well together not just money raised at the auction reception, dinner is served followed the limited number of wheelchair and we hope to see them again that’s incredible, one year a celebrity by the entertainment and auction The school, who are long-term spaces available. And to make the soon.” supporter auctioned a date with and then it’s carriages at 1am. At supporters of the charity and have experience even better, Domino’s herself and she’s now married to the about 2am staff go home for some raised thousands of pounds over the Pizza kindly donated pizzas for Sandi, Guest Editor winning bidder and they have two much-needed sleep! And it doesn’t last 15 years, wanted to get involved everyone as pre-film snacks. “It was lovely to see our children together! end there, afterwards we need to in a new way and offered their teenagers integrating with process all the payments, unpack facilities and their friendship to our Mark Nicholson, Assistant the local school and both benefitting “In the days before the event all the boxes and then turn our youth group. Headteacher at Hampton School, from the experience.” we’re really busy packing up all the attention to next year!”
To donate go to shootingstarchase.org.uk/donate or call 01932 823100 9 A look inside / news A day in the life
“I feel like I’ve been able to maintain, and add to, my skillset here. We Makaton award get great support from the Practice Education and Quality team and Shooting Star Chase has become one I’ve learnt new skills such as seizure of only three children’s hospices in management. A lot of the children have the country to be recognised by The unique pieces of equipment and so Makaton Charity as Makaton Friendly. we’re always refreshing our knowledge.
The scheme rewards organisations “At the end of the day we’ll have for effectively using the language dinner together and then it’s time to programme to provide an accessible, wind down, maybe with some music supportive and welcoming or by watching a film before we do environment for those with learning the bedtime routine and handover to and communication difficulties. A day in the life of a... night staff. A sign of Shooting Star Chase’s “I think for me the best thing about commitment to Makaton is our hospice nurse working at Shooting Star Chase is established Makaton Friendly group having the time and control to be called Friendly Hands! Every month, able to shape the child’s care to do Deborah Green, Volunteer Speech things they enjoy first and foremost, and Language Therapist at Shooting fitting their medical needs around Louise Turpin, a nurse at our like their children to go swimming Star Chase, and Sarah Hodkinson, their enjoyment, which is something Hampton hospice Shooting Star when they’re staying with us as it’s Lead Therapist at Shooting Star you can’t do when working on a House, explains what a typical day not something they can normally do Chase, put on sessions for staff, hospital ward.” children and parents to learn and looks like for a nurse working at anywhere else. Shooting Star Chase. revise key Makaton signs and Professor Popplepants says: “After a morning activity we all sit perform them to music. The sessions “I thought I was clever, “When we arrive for shift we’re down together for lunch – all the are filmed and uploaded to our but those nurses really do allocated a child, who we’ll look after staff, volunteers and children staying website, giving access to parents to know their stuff, and the children for the whole shift. On a long day I’ll or visiting that day. Even though some A look inside... help use Makaton at home. love them too. We’re always looking start at 7am and work until 9pm so children are unable to eat, and are for more legendary nurses – see our I’ll spend a lot of time with that child, tube or peg fed instead, lunchtime In addition, we have introduced website for details.” Makaton symbols and line drawings doing a whole variety of activities. is a time we’ll all be together and Summer Fun Day around both hospices, used Makaton socialise – like a big family. at our staff conference and have “At the beginning of the day I will Under a different theme every year, Summer Fun Day is totally free of plans for a Makaton-themed go through the child’s care plan and “In the afternoon we might go out Why I love Shooting our annual Summer Fun Day is a firm charge to families and has been an member of our charity characters, do a handover with staff from the for a walk to the local pond or river. Star Chase favourite with Shooting Star Chase annual fixture at the hospice for 14 The Friendlies! night shift. After that I’ll get the child One of my favourite trips was to families – with some even planning years. The event enables children washed and dressed and give them Chessington, we took a group of their summer holidays around it to with life-limiting conditions and their “It is fantastic to be officially breakfast or a feed. I’ll think of ideas children all with different conditions ensure they can attend! families, who use both Christopher’s recognised as Makaton Friendly,” of what activities I can do with the and abilities but we managed to get and Shooting Star House, the chance says Sarah. “Many of the children child that day and plan these around them all on a ride they enjoyed and Held in the grounds of Christopher’s, to meet other families and enjoy a supported by Shooting Star Chase their feeds and medications. had a lovely picnic together. That’s the day offers supported children, fete-style day with activities for all are unable to communicate one of the big differences between siblings, parents and grandparents abilities. effectively, which is why we strive “We’re lucky we have such wonderful a hospice and hospital – we get the have-a-go stalls, arts and crafts, face to use Makaton across the charity facilities at the hospice so there’s a children out and about when we can.” painting, donkey rides, a look inside It’s also a day of fancy dress and wherever possible to help us interact lot for us to do without even leaving vintage and super cars, story and always sees families pull out all and provide a wholly inclusive and the building. We might go swimming Louise worked as a nurse in a hospital music workshops, yummy treats and the stops, donning some amazing welcoming environment.” or spend some time relaxing in the high-dependency unit before she Philip Glenister animal encounters. creations. This year’s movie-themed sensory room, play in the garden or began working at Shooting Star Patron event saw incredible outfits from make some noise in the music room! Chase in February. “I love it here Originally, the Summer Fun Day was families including The Wizard of Oz, Swimming is really popular with the because every day is different, “It is an honour to be a Patron organised by a team of volunteers Batman and The Addams Family. children. We are able to get most everything is centred round the child of Shooting Star Chase. I have and it continues to heavily rely on of the children we care for into the and family and what they want to seen at first hand the difference them, both at the planning stage and Nicky, whose son George is supported hydrotherapy pool, which has great do. There’s a large range of ages of the charity makes to the children on the day itself. Each year around at Christopher’s, said: “We plan our health benefits for them plus, with children we work with plus a huge and families and it is always a 35 volunteers help to ensure the day summer holidays around the Summer our state-of-the-art sound and variety of conditions and needs. pleasure to pledge my support is a success from start to finish – we Fun Day, we love it so much!” lighting system, it’s a great place to Some days I am delivering respite wherever and whenever I can.” couldn’t run it without them. relax and have fun. Families really care and other days end-of-life care.
To donate go to shootingstarchase.org.uk/donate or call 01932 823100 11 Family story Family story “I am a Shooting Star it was saying out loud that Max our little family going, to pretend would not survive, that eventually, everything is okay. We struggle to Chase mum. A few whatever he had would get the make it to all of Max’s appointments years ago, that would better of him and rip him out of our while taking care of his therapies, his hands. medications and his social needs. have meant very little We struggle with Max’s physical to me. Today, it means “At first I was against it. I was disabilities and the boundaries this scared. But then we met a lovely brings with it. We struggle with the I belong to a group of nurse from Shooting Star Chase. She responsibility on our shoulders and parents with a child met us at hospital and she listened, the fear that comes with it. The truth asked me how I was and how we is we can’t do it on our own. with a life-limiting were coping. It felt like a huge rock condition and we will falling off my shoulders – somebody “Max is suffering from several life- cared. She was going to help us with limiting conditions but, with the probably have to say it all and support us. And even if we help of Shooting Star Chase, we are goodbye to our children would have to let Max go, she would managing. Shooting Star Chase is be there and support us through it. so much more than just end-of-life way too early. I can’t quite express what this was care; it is our hub, our safe space. We like. Suddenly, I wasn’t so scared can meet up with other families in “But it also means we are very lucky. anymore. I wasn’t going to be the same situation, talk about how Shooting Star Chase is helping us alone with all of this. In the coming we feel and give each other support. make beautiful memories along the months, she helped us get some We have a Hospice at Home nurse way and, when the time comes, we sleep. She came and looked after who is there for us. She helps me won’t be alone.” Max, so I could play with his sister, when I am not coping, she listens, Amelie, or just have some rest. We writes letters, attends difficult Tanja and husband Omar are parents talked on the phone and she helped meetings with me or simply comes to Max, four, and Amelie, six. “When us to deal with everything.” to my rescue. She gives me advice Max was born, we soon realised that when I have questions. something wasn’t right,” explains Tanja. “He was floppy, lethargic, “Our daughter goes to siblings’ days poorly and unresponsive. Things and now knows other children in quickly went from bad to worse. Max a similar situation. They have fun spent his first year on the edge of and have a space to talk about life, he was not expected to survive.” their siblings and how they feel. And, on top of that, Shooting Star Max has severe combined Chase offers us respite. This means immunodeficiency, which causes sleeping through the night from time a weak immune system, making it At nine months, Max was ‘stable’ for to time or spending a day with our extremely difficult to battle viruses, the first time. “Max was able to come daughter, going someplace where bacteria and fungi that cause home – finally. He was fragile and the wheelchair or Max’s needs do not infections. “It is hard to explain what his health was volatile. To be honest, allow us to go. happened to us in this time. Max’s I was scared to go home. Scared I sister was only two and my husband wouldn’t cope. What if he died on “The team at Shooting Star Chase and I had no family or support me? It was tough. We stayed at the has a unique understanding of our nearby. It was ripping us apart. We hospice for our first week away from situation. They accompany us on were not coping with the lack of the hospital. Max was taken care of our journey, help us to make happy sleep and suddenly living between by the superb team and we could memories and be ready for when paediatric intensive care units and rest. I slept for the best part of two the time comes to say goodbye. hospital wards, while taking care of days. We were safe and it was time There are numerous other respite Max’s story Max’s sister as my husband went to recharge our batteries ready to centres for special needs’ children back to work. It was a terrible time. go home to the reality of sleepless in Guildford, but Max’s complex care “Shooting Star Chase is so much more It took us down a very dark road. nights and permanent worries. needs do not allow us to send him than just end-of-life care; it is our hub, to those. It is a sanctuary, our little “When Max was five months old, “Having a life-limited child with island of happy. We come here as a our safe space.” a lovely doctor referred Max to complex care needs brings many family and enjoy some happy hours, Shooting Star Chase. Initially that challenges. The lack of sleep is only make memories and forget what is was a blow. Although we knew Max a very small part of it. We worry a lot to come. We have learned to take it was very poorly, this was accepting and we try to give Amelie as normal one day at a time and I cannot thank that Max could die. Even more so, a life as possible. We struggle to keep Shooting Star Chase enough.”
To donate go to shootingstarchase.org.uk/donate or call 01932 823100 13 Feature Feature
Precious time in the sensory room Creating a memory box
£20 £30
Equipped with a range of specialist facilities including When time is short, creating memories becomes even more musical floors, fibre optics, mirrors, lights, bubble tubes and important. Memory boxes are a key part of giving families water beds, these unique rooms are incredibly popular and a moment they’ll never forget. Our qualified care team adaptable to a range of conditions. They can help relax use memory boxes in a number of ways, such as helping and sooth and they provide a stimulating environment families collect precious memories in one place, or to help supporting non-verbal communication. siblings capture their favourite memories of their brother or sister, which can be a focal point of therapy sessions in the “Nathan was deaf and he didn’t really do taste because future. he couldn’t have solid food, so his eyesight was almost everything and the sensory room was amazing for him. He “The team helped us create memories and keepsakes – used to look at the lights – they made him laugh – and he hand and footprints, photos, casts, finger and thumbprints liked the sensations of the water in the mattress. It was his and a lock of hair. We treasure them all and they help keep The moment you’ll never forget way of exploring the senses.” Alexia, Nathan’s mum. Orla’s memory alive.” Helen, Orla’s mum. Shooting Star Chase is launching a new campaign to enable supporters to provide These are just some of the special moments you can buy to provide invaluable support special moments families can cherish forever. to the families we care for. See more gifts and buy online at shootingstarchase.org.uk/ moments or call 01932 823115. Key moments define family life. And to deliver bad news. We had loads moment they will never forget. when a family has a child with a life- of questions but didn’t say a single limiting condition, these moments thing. We just wanted to get out of We have selected a range of services Family session in the hydrotherapy pool Music therapy session are pushed to the extreme. Some the room. Ali and I drove in silence for that can be bought as part of our are devastating moments no parent a bit, then Ali said we should stop to brand new range of virtual gifts, ever wants to experience, like being talk. We just broke down in tears. The which allow supporters to help in told your child has a life-limiting moment of realisation that our child a more personal way, selecting an condition. “We had a meeting with had such a short life expectancy just activity or special moment for a the neurologist who said his condition hit us. How can you imagine that your family who rely on a specific part was so rare that she’d had to research child will have a really short life?” of our care service. Every time you it herself,” says Sarah, mum to Kyffin. buy a gift online you’ll receive a “She then proceeded to tell us that in These are just two examples of downloadable certificate explaining £35 £50 the worst-case scenario, Kyffin would the devastating moments families the benefit of your gift, which you can never walk or talk, never use his supported by Shooting Star Chase pass on if you’re buying the gift for a hands or be able to sit, and may need have to endure. And that’s a key supported family in lieu of a present to be ventilated. She concluded by part of why Shooting Star Chase for a relative or friend. There’ll also Many families find it difficult to use public swimming pools, Music therapy gives children an opportunity to communicate saying his long-term prognosis would exists – providing the very best care be a range of gift cards available so our hydrotherapy pools are a safe space for families to in new and profound ways, particularly as many we care depend on him making it through the from diagnosis to end of life and in to purchase from our shops and at create special memories. For some, it is the first time they for are unable to speak and struggle to express themselves next few months. It was the worst bereavement. But our care is not just events throughout the community. have been able to take their child swimming, overcoming and their feelings in a safe environment. Sessions are often recorded to give families precious keepsakes. moment of my life.” about supporting families through concerns that they were unable to go into water because of complex needs such as a tracheostomy (an opening to allow the heartbreaking moments, but also Buying a gift from the range will allow a tube in the neck to enable breathing). Thankfully our staff “I believe that without music therapy, our experience of Mum Zainab and dad Ali had a similar about providing a range of services Shooting Star Chase to continue to are fully trained to make this common family activity possible having a life-limited child would have been completely experience. “We attended a meeting and activities to create precious provide the services that make a huge for families supported by Shooting Star Chase. Hydrotherapy different, and far poorer. We watched our beautiful non- at hospital to discuss concerns moments families will cherish. difference to families, and ensure you also provides physical benefits such as helping muscle tone verbal little girl find a special way of communicating. Not about Adnan’s development “We know how your generosity is being and strength, enabling mobility not possible out of water, and only did she learn to interact with the music itself, but also were hoping things would be OK but This Christmas, we’re launching a used. When you have a child with a relieving pain and inflammation in joints. with those of us taking part in the session with her.” Anna, Lydia’s mum. when we walked into the room there campaign to help supporters buy a life-limiting condition, every moment were three people sitting there, and gift to give children with life-limiting counts. Please help us to make those 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 immediately I knew they were there conditions, and their families, a moments precious and unforgettable. gift to ensure the family receives a precious moment relevant to their specific needs.
To donate go to shootingstarchase.org.uk/donate or call 01932 823100 15 Family story Family story 16-year-old Josh were told Josh had weeks or, at best, Josh would likely pass away by the months to live. In that moment our end of the week. He was drifting was fit, sporty and lives changed for ever. in and out of consciousness, and despite courageously rallying a unassuming. He’d had “Josh needed a back operation couple of times, he passed away no significant health immediately as his spine was a few days later surrounded by his crumbling from the cancer. During dad, his sister Ellie and myself. concerns, until one that excruciating procedure further day the family’s world tumours were found growing “Although it was an experience too around his stomach area. We were painful to explain, Shooting Star came crashing down. told his cancer was already at level Chase made it the best it could be. four and the plan was to give him They were amazing. They genuinely Mum Caroline shares chemotherapy and radiotherapy feel your pain and go out of their their story. to help reduce the level to allow way to help. I will always be grateful us to take him to United States for to Shooting Star Chase for the way “Josh had a great capacity to make pioneering treatment. Unfortunately they cared for Josh and our family. lots of friends,” says Caroline. “But he we never got to that point. The support continued after Josh’s also showed maturity far beyond his funeral. I benefitted from counselling years – he was like a wise old man! “Our experience in hospital was sessions, which is part of the He had been my bundle of joy from becoming increasingly worse – at charity’s bereavement service. They the moment he was born and I was one stage Josh was bleeding quite helped me work through the various always excited about seeing him badly and his dad and I were left to stages of grief, the denial and anger develop and working out what he physically try to stop it ourselves. We which is common for a parent when wanted to do in life. didn’t feel we were getting the right their child has died. support and were at breaking point. “But then our world came crashing At that point a good friend of mine down. It started innocently enough who knew of Shooting Star Chase when Josh said his back was hurting. said we needed their vital support. He couldn’t recall an injury playing football or tennis – two of his loves “Josh and I were taken by – so I took him to a doctor, who ambulance to the hospice. The dismissed it as growing pains. We moment we arrived at the hospice arranged for a blood test just to everything changed. We were “Looking back I can’t imagine what make sure, and that came back fine, given a lovely room, and the would have happened to us if we but I did have this lingering worry atmosphere, support and warmth didn’t have the support of Shooting because Josh very rarely complained resonated from every area of the Star Chase in those last few weeks. about anything. building. The surroundings at the It’s scary to even think about it. In hospice are beautiful, with such that sense we were lucky because “A few days later, Josh was staying incredible attention to detail and we know not everyone gets that at his dad’s when he called me very care beyond words. It was such a support. We now hold an annual distraught. He told me he’d found a comfort to us. Josh made friends fundraising day to allow Shooting lump in his groin and was convinced with other children being cared Star Chase to support other families he’d got cancer. I reassured him – I for by the hospice and the family who find themselves in the same think my exact words were ‘don’t accommodation gave me the position as us. We can only do be silly’ – but we went to see our chance to catch up on some much so much, however, so I want to regular doctor, who had been away needed sleep, knowing he was being thank the charity’s supporters for on holiday on our previous visit. He looked after by the care team. I everything they do to keep the care examined Josh and I’ll never forget had barely slept in weeks and they service running. It meant so much to the look of concern on his face almost dragged me upstairs to get my family, and will for many others. when he pulled back the curtain to some rest, but they were doing it Josh’s story speak to me. We were transferred because their support goes beyond “Josh taught me so much with his to hospital where Josh was hastily the medical care for the child; they courage and dignity during this “Although it was an experience too painful to taken through numerous tests and look after the whole family. horrible disease. He didn’t once MRI scans. Within a few days, we complain. He brought so much to explain, Shooting Star Chase made it the best were given the horrendous news “We managed to take Josh home everyone he met and continues to – it could be. They were amazing.” that Josh had Clear Cell Sarcoma. for Christmas Day but were back he taught me how to carry on with It is a very rare form of cancer – so a few days later because he was my life and not to give up. Josh was rare that it does not show up in deteriorating quite quickly. Just and always will be my inspiration. He routine blood tests. Worst of all, we before New Year’s Eve we were told leaves behind an amazing legacy.”
To donate go to shootingstarchase.org.uk/donate or call 01932 823100 17 Fabulous fundraisers A small selection of the Ways you can make every Over amazing things you’ve done to you moment count
Record breaking Sunrise Little Tikes are big stars Werth show their worth Legacy Afternoon Tea A different way to donate Maintenance and Walk Leaving a gift in your will can make Making a donation to our charity housekeeping volunteers New corporate supporters MGA Thanks to the generosity of the a lasting difference long after your shops gives you the opportunity A record number of Sunrise Walkers Are you an excellent cleaner or a DIY Entertainment helped bring some Werth Trust, set up in honour of lifetime. Join us for our Legacy to free up some space, show your turned out in force to help raise a whizz with spare time on your hands? joy with their recent Little Tikes toys Lawrence Werth, who died in 2014, Afternoon Tea on Thursday 9th charitable side and help us to huge £81,600 for bereaved families We’re looking for housekeeping donation. Following a visit to one our hospices are both benefitting November at Shooting Star House, make every moment count for supported by Shooting Star Chase. and maintenance volunteers. Our of our hospices, they immediately from some new furniture and our Hampton hospice, to find out the families we support. Our shop For the fifth year running, Ham housekeeping volunteers help staff recognised that many of the garden equipment to make them even more more about the care we provide and managers are experts at spotting House welcomed the early risers maintain a high standard of cleanliness toys were out of date and fully kitted of a home from home for families. how your support can make a huge the latest trends and quality vintage taking on our flagship event. The at our hospices, making sure they’re out our hospices with cozy coupe The £25,000 gift will fund new sofas difference to children and families or designer pieces to ensure our 415 walkers began the 10km and a home from home. Meanwhile cars, slides, playhouses and toys. In and soft furnishings at Christopher’s who rely on our help. For more shops are full of lovely things. Even 20km routes at 4.30am in time to our maintenance volunteers assist addition to this they have donated as part of its refurbishment and information or to book your place if we can’t sell your items, rags watch a stunning sunrise. After the the maintenance team with DIY, brand new Little Tikes products and purchase a basket swing for our contact Katie on 01932 823109 or make us money too! Take a look at decorating and the general upkeep walk participants celebrated their Zapf Creation dolls for us to sell Hampton hospice, allowing children katie.wallman@shootingstarchase. our wish list online and see what of our hospices, head office and achievements at a post-walk picnic through our charity shops to raise to have fun in our outdoor space. org.uk. sorts of donations we’d love at shops. Find out more and apply at with their family and friends. vital funds. shootingstarchase.org.uk/shop. shootingstarchase.org.uk/volunteer.
Angling for success Theatre group are the Biz Asian adventure Spread the word Gifts in celebration Take on a tandem Did you know we have a group Giving a gift in celebration is skydive! Gerrards Cross and Uxbridge Angling The Biz Theatre Group continued their Young adventurer Tasha Howard of lovely volunteers who act as the perfect way to make your Society showed their support at their support of Shooting Star Chase at embarked upon an epic 4,500km Fancy a thrill for an amazing cause? ambassadors for Shooting Star celebration extra special. Whatever Why not take on a challenge of a annual charity fishing match recently. their 12th show this summer. Over bike ride, along the length of Japan Chase, helping to spread awareness the occasion – birthday, wedding, The club, who have been supporting the last 12 years, the young people’s and South Korea to raise £773. lifetime with a tandem skydive. throughout the community? anniversary or even baptism, The easiest and most popular of Shooting Star Chase since 2010, have theatre group has raised an amazing The route proved testing with From school children to Rotarians graduation or retirement – raised nearly £25,000 through their £34,391 for the charity! As well as mountains, a cyclone, a landslide all skydives, it only requires 30 and WI members to Scouts, our celebrate it with friends and, minutes of training before you efforts so far. All the fishermen taking holding bucket collections in the and 40°C heat to overcome. Tasha ambassadors deliver hundreds of instead of receiving gifts, ask can take to the skies strapped to part in the event are sponsored by lead-up to the performances and said: “Shooting Star Chase have talks every year. If your school, club for donations to Shooting Star your instructor. With jump sites their friends and family and, despite donating all profits from the shows, been an incredible support to a dear or organisation could host one of Chase. Your celebration can make across the UK, you just need to there not being an abundance of the cast delighted the children at friend. I hope my challenge might our ambassadors to tell you more a meaningful difference to the choose your preferred date and about all the fun ways you could fish caught on the day, they raised a Christopher’s, our Guildford hospice, inspire others to get out there and children and families we support. location. So jump to it and visit support us, get in touch with Jane fantastic £3,540. with an exclusive sneak preview of have an adventure, and support Find out how you can help at shootingstarchase.org.uk/skydive Hairspray De Lay on 01932 823100. their show, . Shooting Star Chase too.” shootingstarchase.org.uk/celebration. to find out more details.
To donate go to shootingstarchase.org.uk/donate or call 01932 823100 19 Your moment to Believe Join us for our new festive challenge
Santa Skywalk Special offer forShine Channel your inner Santa as you climb and zip readers. through the trees in this exhilarating adventure. Enter promo code SHINE to get 20% off the registration Saturday 2nd December 2017 – from 11am fee. Skywalk Adventure, Esher, Surrey shootingstarchase.org.uk/santaskywalk