Meet the children

  • Coco’s story

    At just six years old, Coco had a stroke. Here her mother Victoria shares share’s her experience of how Coco had part of her skull removed and stored in her stomach. Being told she would never fully regain consciousness, and her unexpected recovery. It was Easter Friday, and the children were excited about the weekend. Coco and her younger brother, Harley, had just had their bedtime bath when Victoria noticed that Coco had started to speak very quietly. When she asked if Coco was ok, Coco said that she felt tired which was to be expected. A few minutes later when she was tucked up in bed Coco screamed out. Coco at The Children's Trust with her brother during her rehabilitation
    Coco at The Children's Trust with her brother during her rehabilitation
    Victoria recalls: “It all happened so quickly. I ran to her room and picked her up to comfort her, but she immediately started vomiting. My first thought was it was something she ate. I carried her to the bathroom and sat her down it was then I noticed there was something more seriously wrong. “We called the ambulance, thankfully a first response vehicle came within five minutes and an ambulance soon after. Coco was still breathing but was not at all responsive. It was surreal. There was no time to process what was happening. I went in the ambulance with Coco, and Ronnie, Coco’s dad, stayed behind with Harley.” At just six years old, Coco had suffered a stroke: “I’ll never forget being in A&E. Coco had just had a CT scan, and I was taken into a room and told it was a massive brain bleed. All I could think was, she’s was only six, it’s not possible! I was on my own when they told me and I was in shock.
    Coco with her mum, Victoria
    “They couldn’t say what the outcome would be. Whether Coco would survive. Nothing made sense, she had been playing and chatting only hours earlier when in the bath with Harley.” Coco was soon transferred by ambulance to Great Ormond Street Hospital. A team of doctors were waiting by the entrance when we arrived and she was immediately taken for another CT scan. I can still hear them saying “this is where you have to say goodbye." Shortly afterwards we had to sign the consent forms for the surgery. It was then the surgeon said "please prepare yourself for the worst as your child is likely to die.”

    Eight agonising hours

    Coco was in theatre for eight agonising hours. The pressure on her brain meant that she needed emergency surgery. The situation was so serious surgeons removed part of her a skull to allow her brain to swell without further damage. The part of the skull that was removed was then stored in her abdomen so that her body could maintain it: “You could see it in her tummy, it was a hard triangle shape” explains Victoria. Coco survived the surgery: "It was the most amazing moment when the surgeon came to tell us the news." "After surgery, she was put into an induced coma in intensive care, but after a week when they withdrew the coma drugs she didn’t really wake-up. They described it as minimally conscious. It was frightening and we felt completely helpless. It was a real low point. We were all devastated but held onto any hope that this just couldn't be the outcome of our little girl. Coco in intensive care
    Coco in intensive care
    "We were told that Coco's stroke was caused by an AVM (arteriovenous malformation) a tangle of arteries and veins in her brain. While still in intensive care the doctors performed an angiogram to check the AVM was not at risk of causing a further stroke: “It was on this day, what we now call Angiogram day, Coco smiled. We were really hopeful, and both Ronnie and I felt that she was still with us. But the doctors didn’t seem to share our confidence. Yet Coco went from smiling to starting to slowly turn her head towards people when they spoke.” "After 6 weeks in GOSH, we were transferred to The Whittington Hospital. Coco wasn’t talking, moving or eating at this point. But soon she started to hold her head-up and slowly she regained movement in her left arm. It was June when Coco returned to GOSH to have her cranioplasty operation, to replace part of her skull. It was just before her 7th birthday. “At that point I hadn't been home since the night we left in the ambulance. When I did return home, it was a big moment, especially as I was going home to her room and all her things but no Coco. It was horrible, I didn’t want to be there without her.”

    Rehabilitation her best hope

    Three months after her stroke, Coco moved to The Children’s Trust in, Surrey for specialist brain injury rehabilitation. They set a programme of therapy and rehabilitation goals to help her regain the skills she had lost: “For the first time since the stroke, I didn’t sleep in Coco’s room with her. It was really hard, but the nurses who looked after her reassured me she was safe. The Children’s Trust was nice because it was less medical – it didn’t have the bleeps from the machines for a start.” Coco at The Children's Trust during her rehabilitation
    Coco at The Children's Trust during her rehabilitation
    “We were there for seven months in total. With help from the physiotherapists, Coco started to make amazing progress. She started to stand for brief moments, and eventually take little steps. She surprised everyone. “Some progress was slow and gradual, whilst other things happened suddenly. One day we were outside having a picnic, and she just started eating. It was much sooner than anyone had anticipated, and by the time she returned home she was eating complete meals independently. It was moments like those that made you realise anything is possible. You don't ever give up hope or put limits on brain injury recovery.” “The Children’s Trust was a good place for Harley too, we could try to process what had happened. It was very difficult for him to understand. Although he is three years younger, Coco was suddenly the toddler learning to do things again. They have always been very close, and he wanted to play with her as he always had done. It was heart-breaking watching him trying to get her attention. He still talks about the night she had her stroke.” “The last two years have been a huge learning curve. I’ve had to learn about the changes in her brain, learn how to do her medication and how each helped her body. The Children’s Trust helped Victoria and Ronnie learn the skills they needed to support Coco with her recovery, and return home. “We were so pleased to be home. But anxious at the same time. Going from a network of support around you to just you was daunting. We also had to have some adaptations made to the house, like handrails on the left-hand side (as Coco now has hemiplegia, a weakness in the right). But she has continued to go from strength to strength.” Speech and language therapists at The Children’s Trust had helped Coco start to learn some words, and she can now hold a short conversation: "Concentration, fatigue and word finding difficulties are her biggest barriers to chatting non-stop like she used to do." She is also starting to read again and is unbelievably back in her old mainstream school for 2 days a week. Coco before her stroke
    Coco before her stroke

    Things we never thought possible

    “At Christmas, Coco took part in a 2k Santa Dash with all of her friends and family. She smashed it managing to walk most of the way and everyone cheered when she crossed the finish line" “Last September Coco travelled to Sheffield for 'Gamma Knife' Radiotherapy specifically targeted to destroy the AVM. The procedure was successful however there is no guarantee of it working completely.
    We won’t know for another 2 years. There will always be a small risk of another bleed until every bit of the AVM is gone. “Brain injury is difficult to describe. Coco is a very different Coco than before, personality wise, and that’s the hardest thing. There is a grief for how things have changed. A period of her life has been taken away. Yet, you can’t grieve for what is lost because you’re not sure what is actually lost – she is still recovering and making improvements far beyond our expectations. “It is quite a different world we live in now. It is hard to watch the way some people treat Coco now she has disabilities. You can see she just wants to be a kid again but people don't take the time to understand her. Coco isn’t really disabled until someone stops her from doing something. She is one determined little girl and we couldn't be more proud of her.”

    #MyBrave

    Coco supporting The Children's Trust #MyBrave campaign
    Coco taking part in our #MyBrave campaign
    Every year over 40,000 children in the UK are left with a brain injury as a result of an accident or illness. Many make a good recovery, but thousands have to live with ongoing, long-term difficulties. The Children’s Trust helps children make the best possible recovery through specialist brain injury rehabilitation. Coco is sharing her story as part of The Children’s Trust campaign #MyBrave Bravery isn’t only heroic acts. Sometimes it’s about facing your fears, rising to the challenge and overcoming obstacles, like Coco and many of the children with acquired brain injury have. The Children’s Trust is encouraging everyone to go outside their comfort zone, take on a challenge and do something brave to help raise money for children with brain injury.
  • Tyler’s story

    Tyler, who was diagnosed with a brain tumour four years ago, has appeared in a special animated film by The Children’s Trust aimed at helping children with brain injury get the support they need in their community.
    Tyler with her mum Liz
    13 year old Tyler from Craven, North Yorkshire, was diagnosed with a brain tumour in September 2013. Following surgery, chemotherapy and radiotherapy, Tyler was doing well and returned to school, although she was left with a serious brain injury. As Tyler moved to secondary school, her difficulties with memory, fatigue, concentration and balance became more apparent. She felt increasingly isolated and was quickly losing confidence. The Brain Injury Community Service (BICS) supported Tyler with secondary school, ensuring she received the right assistance in class and input from local therapy teams so that she continued to improve. In the hope that it will help children and young people experiencing similar difficulties, Tyler and her mum Liz appear in the film as illustrated characters accompanied by a personal recording of their experiences. The video explains the Brain Injury Community Service, delivered by The Children’s Trust, which offers children with acquired brain injury free clinical screening, advice and onward referral after they have been discharged from hospital and at key stages of childhood. Liz, Tyler’s mum said: “It was great to be able to do something positive and try to help people going through the same things we have been through. It’s been a very difficult few years, and at times it felt like nobody was listening. The Brain Injury Community Service has helped us to access the support Tyler needs, and it’s reassuring to know it’s there when we need it. We’re very grateful to The Children’s Trust for its support.” To watch and share the film, visit www.thechildrenstrust.org.uk/BICS
  • Seb’s brain injury story

    Seb was nine years old when he suffered life-threatening injuries, falling from the exit door of a double decker coach on the way back from a rugby tournament. He suffered multiple injuries including damage to his brain and sight loss. Seb meets comedian Adam Hills at The Children\'s Trust
    Comedian Adam Hills visits Seb at The Children's Trust in 2014
    Seb was travelling home with his brother and his dad, when he fell through the 'hair trigger' door of a faulty coach.  He was dragged under the back wheel and had his right leg crushed, but his life was saved by passing medics who treated him at the roadside. Following initial surgery where Seb’s leg needed to be amputated, Seb had two cardiac arrests resulting in brain injury. He was in a coma for several weeks and when we woke he couldn’t see, speak or move. After a long stay in hospital, and several operations, Seb moved to The Children’s Trust for three months intensive brain injury rehabilitation, to help him relearn how to eat, walk and talk again – skills he had lost because of the injury to his brain. When he first arrived at The Children’s Trust, Seb was in a wheelchair and very fragile. He had vision problems. He was suffering from severe fatigue, with very little movements in his hands and fingers. His right side was very shaky with little control. Within six weeks into the specialist rehabilitation programme, Seb started to get out of wheelchair and stand for moments at time. His spirits lifted and his fun, cheeky personality shone through. With support and encouragement from The Children’s Trust Health Play Specialists, Seb became involved in games, team activities and sporting activities. Still coming to terms with his amputation, Seb was also able to go on day trips with the Play Team which helped to rebuild his confidence and his independence. Seb and brother Ben hugging in The Children's Trust t-shirts after meeting David Walliams
    Seb and twin brother Ben in 2016
    Gradually, step-by-step, and with lots of spirit, determination and patience, Seb started to relearn how to walk, talk and dress himself. One particular area of Seb’s rehabilitation focused on his vision. Seb’s brain injury affected his eyesight and his ability to understand the things he was seeing. Through occupational therapy, Seb was able to develop his visual scanning, which was especially important when he was learning to move independently. Therapists played games where he was encouraged to look for thing and describe what he was doing to improve his visual processing. He was also encouraged to use a computer with using high contrast keys and enlarged icons, which was gradually reduced as his visual skills improved. The support of his family, and especially his twin brother Ben, was a crucial to his recovery, and thanks to the generosity of the public, Seb’s family were able to stay at on site at The Children’s Trust too and keep Seb motivated, as well as learn some of the rehabilitation techniques themselves so that they could support him when we moved home. Seb left The Children’s Trust to return home in December 2014. He is now back at School with his twin brother Ben. And he continues to work very hard at his recovery, ‘aiming high’ for his future sporting life.
  • Mikey's story

    12 year old Mikey was diagnosed with a brain tumour just before Christmas 2011, he was just seven years old. To date Mikey has undergone three operations to remove the tumour, chemotherapy courses, proton radiotherapy and had a shunt fitted to drain fluid from his brain. Complications during his last operation in April 2015 left Mikey with a brain injury, unable to sit-up, walk, talk or feed himself. After receiving six months intensive rehabilitation at The Children’s Trust in Tadworth, Surrey, the youngster has returned home and is making great progress towards his goals walking and talking. Mikey’s mum Donna explained: “It’s been a gruelling six years that began when Mikey started to be sick in the mornings. He’d become very clumsy, and complained of problems with his vision. After numerous visits to the doctor and local hospital, he was diagnosed with a pilocytic astrocytoma, a brain tumour.” Mikey underwent 12 hours of brain surgery to try to remove the tumour but unfortunately it was wrapped around the brain stem and could not be fully removed. Months later the family was told the tumour had started to grow back. Doctors tried various chemotherapy drugs over two years, the tumour didn’t respond to any of them. Mikey had to undergo more surgery and a large section of the tumour was taken away, but it still couldn’t be fully removed. The best hope Mikey had was that it would stop growing. His last operation was extremely risky, but without it he would die.Unfortunately part of Mikey’s brain was damaged in the operation which meant that he lost many of the skills learnt as a child that many of us take for granted.   Mikey moved to The Children’s Trust’s unique rehabilitation centre for acquired brain injury, where he received intensive therapy including physio, speech and language, occupational therapy, music therapy and hydrotherapy. He was also invited to take part in activities and days out that complimented the skills he was learning in therapy. Donna explains: “Mikey was very frustrated with himself when he first arrived at The Children’s Trust and taking it out on anyone he came into contact with - he couldn’t understand why he could no longer do the things he used to do. But with the support of the team at The Children’s Trust, Mikey soon turned the negatives into positive energy. And he determined to get better.
    “It’s been a really tough few years for all of us but Mikey has remained positive. We have been at The Children’s Trust for six months and he’s has worked really hard at his rehab. He even took part in a play just before we left The Children’s Trust, where is sang ‘Over the Rainbow’. “Mikey loves football and is desperate to play again. One of his highlights during his stay was meeting some of the Crystal Palace FC players. He was so determined to show them what he had been practising – he stood up, walked and even kicked a football with them. I was very proud.”
    When talking about the future, Donna said: “The behaviour of Mikey's tumour can’t be predicted so he will have regular MRI scans. Treatment options have practically been exhausted, so there are currently no plans in place. Our biggest hope is that the tumour leaves him alone, but we know that there are no guarantees. Our focus is simply to make a few more memories, and now we are home we are doing exactly that.”
  • My name is Debbie and I am the mother of three wonderful girls Catherine, Ellie and Jo. When we found out that I was expecting triplets my husband and I were delighted, we were excited to be beginning this new part of our life and unaware of the challenges which lied ahead. Our baby girls arrived early, and whilst Catherine was fine, Ellie was born with learning difficulties and Jo was severely disabled. But despite these unexpected challenges, our girls grew up happy and secure. At seventeen, Catherine was studying for her A Levels and choosing a University. She was always ready to help me and her father and helped to look out for and care for her sisters. We were a loving, settled family. One day in 2010 this all changed. Catherine and her father were involved in car accident which left Catherine with a severe brain injury. Catherine underwent rehabilitation at The Children’s Trust and I want to share her story with you and tell you about the incredible work that is done by the nursing and therapy staff there. It is because of them that Catherine has been able to come as far as she has and I hope that by reading her story you will consider offering your support to the important work that they do. Catherine’s Story The accident It was a September morning in 2010. My husband, Barry, and Catherine had already left the house together by the time myself and Ellie headed out to Ellie’s riding lessons. On our way I heard on the radio that a road nearby was closed, for a brief moment I was worried before pushing the thought aside. When we arrived at the stables I sent Catherine a text just to check she and her dad had arrived at their destination safely. No reply. So I sent another and then another and then another. Again and again there was no reply.    By the time we headed home I was beginning to feel uneasy. What if something had happened? No, I told myself, I was being silly, there could be dozens of reasons why Catherine hadn’t replied. But when we pulled up to our house, my worst fears were confirmed. Barry’s car was not in our driveway and our neighbour was waiting anxiously for me with a message to contact the police. ‘If you are going to come, you need to come now’. Barry and Catherine had been in a car accident. Barry had not survived, passing away at the scene of the crash and Catherine was in hospital fighting for her life. In the space of a few hours my entire world had fallen apart. The hospital I rushed to the hospital. When I arrived my little girl was lying in a bed unconscious, her neck was in a brace and there were tubes going in and out of her. I was told she had suffered a severe brain injury and that I should prepare myself for the possibility of a double funeral.  Catherine spent a month in intensive care and underwent treatment to relieve the pressure on her brain. The entire time she didn’t regain consciousness. I would sit with her for hours, sometimes she would blink or it seemed as though she was responding to something that had been said and despite what I had been told I was sure she was still there. After several long weeks Catherine was well enough to be moved to a different ward. She began to open her eyes but she didn’t recognise me. A doctor told me that she might never know me and that she would likely never be able to talk, stand or even sit up independently. I shook my head, my daughter was a fighter. The Children’s Trust The new ward was noisy and busy. Catherine was becoming increasingly sensitive to the constant hustle and bustle of her surroundings and reacting poorly to it. I knew that I had to find somewhere else for her to undergo rehabilitation but I had no idea where. Then our local clinical commissioner recommended The Children’s Trust and arranged a visit from their therapists. They saw straight away that Catherine needed to be in a calmer environment. They invited me to go to their rehabilitation centre in Tadworth, Surrey and I immediately knew that, this was where I wanted Catherine to be. So in December Catherine left the hospital, still wearing her hospital gown. By the time I joined her at The Children’s Trust, Catherine was in her own clothes, she had been bathed and her hair had been washed for the first time since the accident- she sparkled. I knew then that things at The Children’s Trust were going to be so different for Catherine. Slowly the light began to come back into her eyes. Then in March the staff told me they believed that Catherine was responding to ‘yes’ and ‘no’ and that she was moving her arm independently into and out of her lap. From there on Catherine progressed day by day, learning to sit up by herself, how to talk, and she began to do little things most people take for granted like wiping her own mouth. For Catherine these were huge milestones which she conquered one after another. Each day Catherine underwent different types of therapy. Her favourite was Physiotherapy and it was here she showed how determined she was, first learning how to stand again and then with the help of the parallel bars she took her first steps. I was so incredibly proud of her. And therapy wasn’t just hard work at The Children’s Trust. The staff made it fun for Catherine, for instance by using games to help her to balance by having her reach out to play connect4 or by helping Catherine do things she loved before the accident.  Catherine had been a talented clarinet player and during music therapy the therapists worked with Catherine to be able to play a note. To see her be able to do this was amazing; at one point I had thought that she would never be able to hold her clarinet again. Your support Whilst she was still at The Children Trust we returned to the hospital where Catherine had undergone treatment after the accident. The doctor was amazed by her progress. ‘This’, he said ‘is what can happen with good rehabilitation’. I know that Catherine was very fortunate, The Children’s Trust brought her back to me and she would not have gotten so quickly to where she is now without their help.   Yours sincerely, Debbie.
  • Sophie's Story 

    Sophie, now four, sustained a brain injury in 2013

    Sophie's family, the Stainthorps, (Sophie, Deborah and Lee) are from Lincolnshire. They share their story here and It's a very powerful read. We would like to thank the family for sharing this with us.  Sophie was revived by paramedics, and mum Deborah, at the scene and was flown by the Great North Air Ambulance Service to Newcastle RVI. She sustained critical injuries and was in intensive care on a ventilator for 10 days before medics started trying to bring her round.
    Sophie with Mum and Dad, Deborah and Lee
    Due to lack of oxygen Sophie has sustained severe, permanent brain damage. Sophie also had five broken bones which have now healed beautifully according to her surgeon, who had to wire both of her thigh bones during surgery.  Sophie was transferred to the paediatric neurology ward in the RVI where a team of therapists began her neuro rehabilitation and were led by consultant neurologist Dr Rob Forsyth, an expert in his field. Sophie cannot speak, eat or move as the part of the brain that has been damaged controls movement and coordination. It has caused some muscles to spasm involuntarily or tighten so her arms are always pulled up. She has regular startle seizures in response to sudden or loud noises or sudden sensory input such as a cough or a door clicking. She can see even though the messages her brain send back and forth from her eyes are mixed up and confused. It means she has to work very hard to focus on and track things. Her favourite thing to look at and concentrate on is Daddy! She's is able to turn her head and look around towards certain toys that she favours.
    Sophie's story from The Children's Trust
    Sophie enjoying the outdoors
    "We feel certain that she's in there somewhere and any of you who have met Sophie will know how rambunctious, outgoing and determined she is. We know we have a very, very long road ahead of us to try and find a way for Sophie to come back to us but we know that she's trying as we can see it in her eyes.  It will take years of rehabilitation before we know how Sophie will 'be'," shares Deborah. "It is the question on everyone's lips and is the one question the doctors and colleagues cannot answer. He told us that brains have a certain level of plasticity in young children and have some ability to reroute and rewire pathways. We just don't know at which point she will stop rerouting and rewiring. Our thoughts are that we have to have realistic expectations and come to terms with the fact that Sophie will never fully recover from this. However, it won't stop up from hoping high! "She has already been working hard on blinking on command to try and communicate and can move her hands, just an inch or two, to an appropriate stimulus such as pointing to a book or waving goodbye to her Physio. "She now kicks her legs with more strength and consistency during hydrotherapy sessions and her alertness and facial expressions are gradually beginning to reappear. We've even had a few little smiles when she goes over the bumpy grass in her buggy or give her a lovely big wriggle or bounce." You can follow regular updates on Sophie here
  • Ethan and Tina
    When Ethan was diagnosed with a brain tumour our lives turned upside down, explains mum Tina. The operation to remove a grade five tumour went well, but later Ethan developed 'cerebellar mutism' and 'posterior fossa syndrome' – he couldn't speak and didn't have any control over his body. Ethan was having chemo, physio, rehab in between 12 operations. I was with him 24/7, learning as I went.
    Ethan in wheelchair
    "You want to help your child but you've never done it before, not like this. That struck me at The Children's Trust, the staff supported me just as much as they supported Ethan. I found it difficult to leave Ethan, and when we arrived I was surprised by The Children's Trust staff telling me to go for a cup of tea. I didn't really know how to leave him. Ethan too was anxious. He didn't want to be away from home any more. But I stayed in the parent's accommodation which was fantastic, and we drove home every weekend."
    Ethan with Richard Hammond
    Because of the location of the tumour, Ethan became reluctant to use his voice and found eating difficult. Knowing that he liked marshmallows the therapy team hid them for him to find, so that he was having fun while pushing himself. Whereas I would have done things for Ethan, staff knew what he was capable of and made him do it himself. Gradually he grew stronger and stronger. Ethan is back at school now, and his friends stick him in goal because his wheelchair keeps the goals out. It is without doubt the all-round support that Ethan received at The Children's Trust that made all the difference to his future. Ethan added: ‘‘They have everything you need at The Children's Trust, but they just need a roll through KFC.’’
  • Abraham with his family
    Abraham's family are the centre of his world and the prospect of playing in the garden at home with his sisters again and going to the same school as them is encouraging him to make the best recovery he can while he stays at The Children's Trust for rehabilitation following a severe brain injury. Abraham was knocked over by a car on the way back from a midweek church service with his family. While he was in a coma, his mum and dad were told he had suffered a severe brain injury and may not survive.
    Abraham with a teacher
    Mum Mariatu stayed by his bedside, sleeping on a camp bed which had to be put away by 7am every morning in time for the ward round. When Abraham was transferred from hospital to The Children's Trust to begin his rehabilitation, his parents were initially apprehensive about being 50 miles from home, but Mariatu says: "Being able to stay here on site has made a massive difference. When we came he couldn't eat or talk well, couldn't walk and wasn't comfortable sitting. I felt he was too little to be on his own. Here, you can be with your child all day and feel safe to have some time for yourself, knowing he is in good hands. I'm sure having either me or his dad always here has helped him recover faster. It is like a big family."
    Abraham with his sisters
    Every child staying with us for brain injury rehabilitation has a therapy programme individually tailored to them. For Abraham and his family, physiotherapy was especially important to help him get mobile. Joanne Harbinson, Physiotherapist explains: "When he came to The Children's Trust Abraham didn't have any active movement in his left leg or arm. Together we're working on his walking either using a frame or supported by a therapist and he's doing really well. One of the tools we're using is a special tight-fitting lycra suit that makes movement easier for him. We take Abraham horse riding weekly to help his core stability and he really enjoys hydrotherapy in our pool. He can also now happily sit unaided and play with his toy cars." Determined Abraham is working hard on his therapy programmes, having regained much of his speech already, and is now starting to take steps with a walker. "Walking is a big thing for Abraham and his sisters love boasting to their friends about how well he's doing," says Mariatu. ‘‘We're getting our son back.’’
  • Megan with music therapist
    Music is a big part of 14-year-old Megan's life and because she has Rett Syndrome it is one of the main ways that she communicates with those around her. During music therapy classes she has learnt that by hitting something or banging a drum she can let others know that she would like more of what she is listening to. Rett Syndrome is a rare condition that affects the development of the brain and causes severe physical and mental disability that begins in early childhood.
    Megan and Grandmother
    Since 2012 Megan has lived at The Children's Trust in Tadworth, and attends The Children's Trust School where music therapy is a key part of the curriculum. Her Grandmother Lynda explains: "When she lived with us I would take Megan to the theatre to see musicals at every opportunity and I still do whenever she comes home for a few days. She just loves it; it brings a tear to my eye to watch her face light up. So music has been a key part of her life since she was young, but now it is even more important as it allows her to be more vocal and communicate."
    Megan with music therapist
    "Megan will respond extremely well with one to one attention and she has an incredibly infectious giggle. It really is so lovely to hear Megan make sounds, as it is her way of talking to us." ‘‘The teachers at The Children's Trust School know how much to push Megan so it is great to see her developing as she goes into her teenage years.’’
  • Lauren
    Pressing a large round switch that looks like a big coloured button, 15-year-old Lauren is operating the hairdryer staff are using to dry her beautiful blonde hair. The moment she takes her hand off the button though, she's switching it off, which she often does for fun! Like most teens she enjoys getting her hair and nails done but these are activities she needs help with. Lauren has Rett syndrome, a genetic condition which affects about 1 in 12,000 females. She also has curvature of the spine and uses a wheelchair to get around. Independence and the chance to express her own views are key for Lauren; skills she's been developing since coming to our school four years ago. So whether it's watching her favourite Disney film Beauty and the Beast, listening to music from rappers Eminem or Snoop Dogg or exploring multisensory apps on an iPad, Lauren knows what she likes.
    Lauren at The National Gallery
    Mum Sarah explains: "Lauren's very independent minded. It's important for Lauren and us that her opinion is always taken into account. The school's curriculum gives Lauren routine and lots of opportunities to do the things she enjoys like hydrotherapy, and she adores interactive poetry sessions." As well as using an iPad, Lauren has been developing her independence through an eye gaze system at school. It has an inbuilt camera which tracks where her eyes are looking, allowing her to move a mouse pointer around the screen. Lauren can 'click' the mouse by blinking, staring at the screen for a length of time, or using a switch. Sarah explains: "Lauren's progressed to a definitive system of showing 'yes' or 'no' and can happily concentrate for 10 to 15 minutes on an activity if she's enjoying it." ‘‘She knows what she likes and she likes what she knows, just like any other teen.’’
  • Josh's Story

    Like most children, nine year old Josh loved riding his bike. But during the Easter break 2011, Josh was involved in an accident. He lost control of his bike and was crushed by a moving car. Josh's dad John explains: "Josh was on his back, his legs round by his head, his mouth and nose filled with blood. He wasn't breathing. As a police officer you're trained for this, but nothing can prepare you when it's your own child."
    Josh-and-John
    After 73 days in a coma Josh woke: "I remember it as clear as day, I was asleep next to him and I heard a voice calling 'Dad'. From then on you know there is a long way to go - we were told that Josh would be in a wheelchair for the rest of his life - but it's your first sign that he's still with you, and it's the best feeling." Although Josh was awake, he was unable to talk, walk or eat. He came to The Children's Trust for intensive therapy. John explains: "Rehabilitation was a big struggle for Josh. He spent months indoors learning how to do things again. That's tough for a boy who loves being outside. As part of his therapy, The Children's Trust provided day trips. They were Josh's first bit of normality – it showed him that life can be fun, which helped with his psychological rehabilitation. As a result he discovered horse-riding which helped build his core stability and was invaluable in getting him on his feet again. "Josh has defied all odds. He's back in school, he's walking, and one day, out of the blue, he got on his bike and rode. His recovery has been unbelievable." ‘‘Without The Children's Trust, I would not have the lad that I have today.’’
  • Two years ago, 15 year old Joe, a passionate rugby player, sustained a brain injury following a blow to the head.
    Joe with his brothers
    Joe's Mum Kelly explained: "I was looking after my two younger sons' when I got a call from Joe's school to say he'd had a fall and could I collect him. As I pulled up at the gate, I noticed a paramedic's car. They were waiting for an ambulance - Joe was completely incoherent and couldn't explain what had happened. "We were taken to the hospital by ambulance with the sirens blasting. It was all very surreal. Joe was so agitated they had to anesthetise and ventilate him. He was kept in overnight and discharged the next day with concussion." Whilst 80% of children and young people with concussion recover within 7-10 days, 20% have longer lasting symptoms and 5-10% develop post-concussion syndrome which can take a year to recover from with a small number 'never recovering'. "Six weeks after the incident, doctors were concerned that Joe was not making the recovery they'd expected. His short-term memory was affected; he had insomnia and headaches. "Alison, our Brain Injury Specialist became involved about seven weeks after Joe was discharged from hospital. She was fabulous. Everything she mentioned was exactly what we were experiencing – and she was able to help us to understand the healing process Joe was going through. She gave him lots of coping methods to help him get through a school day and liaised directly with school to ensure that they gave him the support he needed. Joe had to take a year out of rugby, which he was very upset about, but something positive came out of it. He decided to try his hand at coaching, and started to coach his younger brother's team, which he loved. ‘‘We cannot thank The Children's Trust enough, the support they have given us made a huge difference to us.’’
  • Tommy using his walker
    Tommy was just two when he fell 50ft from a hotel balcony on to concrete below. His parents were told his injuries were so severe he might never walk or talk again. Tommy's recovery was slow. He had hemiplegia, which caused paralysis of the left side. He could not sit-up, he had very limited movement, no speech and had to be tube fed. Just over a month after Tommy's accident, he was transferred to The Children's Trust. He began an intensive rehabilitation programme specifically designed for his needs. With the support of The Children's Trust's expert team of doctors, nurses, physiotherapists, occupational therapists, speech and language therapists, Tommy began to make progress in the positive atmosphere.
    Tommy with family
    He had therapy sessions at least five times a day. Much to their relief, his family started to see significant improvements. In September, Tommy sat up by himself. It was a wonderful milestone for Tommy. More milestones were to follow: soon, Tommy started to sing, and at Christmas he took his very first steps. Tommy's speech returned and he loved listening to his favourite American TV show – 'Mr Ray' which he responded to whilst in a coma.
    Tommy then and now
    Eight months later Tommy returned home with his family, able to stand and walk with support, aided by a special 'second skin' lycra suit to help with toning, stability and co-ordination, ensuring that Tommy learns what normal movement patterns are.
     
  • In July 2013 Ryan Smith, 16, from Lincolnshire was hit by a van as he was cycling to work and he suffered a life changing brain injury.

    Ryan had been hit by a van while cycling to work and had been left in a coma. His life was in the balance. At the time his family, although in shock and grief, released a heart-breaking image showing Ryan’s father, Mark, cradling his son’s head as he lay unconscious in a hospital bed, in the hope it would encourage other cyclists to wear helmets. Ryan remained in a coma for 123 days, and his family were told that he might not survive. Eye activity suggested he might be registering voices around him but there could be no certainty until, four months after the accident, Ryan opened his eyes. His family had been talking to him, including telling him he had passed all his GCSE exams; he had gained A grades in maths, English Language and Literature and an A* in physical education. Now it was his turn to talk. Ryan's dad, Mark said: “I asked him to say hello and he took a deep breath and said, ‘hello’. After jumping around for 10 minutes I composed myself and thought I’d push my luck and ask him to say dad. He did. Then he went and said “Mum.” Ryan and Mark both stayed at The Children’s Trust for nine months, where Ryan received intensive therapy. “The Children’s Trust is a fantastic place," says Mark. The 24/7 care at The Children's Trust supported Ryan to learn how to eat orally again, instead of through a tube into his stomach, and he developed his speech. By April, Ryan stood unaided. Ryan still has a long way to go. His left side is extremely weak still. He’s had operations on his feet to get a better angle on his feet to help him with walking. He’s back at school, he’s getting therapy there. One of Ryan’s biggest achievements is that he achieved an A in his GCSE maths. “The school has learnt that cognitively, he is still in there. It is just a process of plucking it out and encouraging him to do the things he can do,” Mark said. Ryan’s friends have been integral in his recovery, coming to visit him every week. "Since we’ve been home, it’s not just about family all the time, and therapists. "It’s about his friends. He’s trying to emulate them again. His determination has shone through since he’s been home so we’ll just keep working with that." "Ryan has defied medics with his progress. From day one, his prognosis was bleak; he wasn’t expected to be here. We were supposed to prepare for demise. Then we were told he wasn’t going to be able to do anything again. And now he’s going from strength to strength. And long may that continue."
  • Leighton was diagnosed with an acquired brain injury when he was in secondary school following surgery for a temporal lobe brain tumour. Following surgery Leighton and his family noticed he was having a number of difficulties with his thinking skills, communication skills, emotional wellbeing and behaviour.

    Why was Leighton referred to us?

    Leighton was referred to The Children’s Trust’s Brain Injury Community Team by his community paediatrician due to changes in his academic abilities and concerns around his behaviour in school. His behaviour meant he was only attending on an ad-hoc basis and he was frequently excluded, he was very unhappy in school.  Leighton was socially isolated in school and in the community due to his difficulties and the level of support he required to keep himself safe. This had led to some involvement with the police and exclusion from school trips.

    What support did Leighton receive?

    Funding was agreed for the Brain Injury Community Team to complete an interdisciplinary assessment with Leighton, followed by a programme of support. Leighton was assessed by our neuropsychologist, occupational therapist and speech and language therapist to determine his strengths and difficulties following his acquired brain injury. He was also assessed in his school environment. We identified that Leighton was having particular difficulties with his memory, attention, fatigue, impulsivity and social communication skills. His memory problems were having a significant impact on his progress in school. Following the assessment, meetings were held with Leighton’s family, school and local professionals to explain the results and specific recommendations were provided to support his difficulties. A programme of support was put in place and carried out over a 12 month period. During this time we helped Leighton, his family, school and local professionals to understand more about his acquired brain injury and the impact it was having on his ability to function within his home, school and community. We helped the adults supporting Leighton to implement specific strategies in relation to his cognitive, communication and behaviour difficulties. We worked with Leighton to introduce strategies to support his memory and attended meetings with Leighton and his family regarding his educational needs and transition into college.

    Outcomes

    Leighton’s assessment and programme of support resulted in many positive changes for Leighton and his family.
    • A new school was found for Leighton that was able to meet his needs
    • Leighton was able to attend school full time and there were no incidents of exclusion or police involvement
    • Leighton found a new group of friends and reported being much happier in school
    • Teaching assistant support was set up for Leighton in his lessons, he started to participate more and enjoy his lessons
    • Leighton successfully attended residential trips with the school
    • Leighton successfully transitioned to college and works as a volunteer in The Children’s Trust shop in Canterbury at weekends.
    ‘‘“Before The Children's Trust got involved, I was only at school for an hour a day because I was considered to have behaviour issues. But The Children's Trust helped me get into a school which was suited for my needs. They also help people to understand my difficulties. Now I am in my second year at college, doing performing arts and I have recently completed my Gold Duke of Edinburgh Award - if The Children's Trust had not have helped me, my life would of been so different”’’Leighton ‘‘“I found The Children's Trust site after being told to look for rehab for brain surgery. As soon as I started reading some of the case studies it started to fall into place. Throughout the time we were supported beyond what we could ever hope for. They made me feel like I wasn't going mad and helped put into perspective what was going on with Leighton due to surgery. The Children's Trust made us a family again and for that I'll be forever thankful”’’Pam, Leighton’s mum Contact the Brain Injury Community Team 01737 365 864
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