Meet the children
Mikey's story12 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.”
Sophie, now four, sustained a brain injury in 2013Sophie'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. 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. "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
- 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. "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." 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'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. 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." 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.’’
- 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. 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 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.’’
- 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. 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 StoryLike 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." 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'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 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. 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. 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."