*** Update ***
We’d like to say a huge thank you to everyone who donated to Charlie’s appeal. He’s now met his fundraising target for a specialist seating system!
Charlie wanted to share this message: “I would like to say a great big thank you to you – Children Today – and to everyone who donated for my chair. It was just amazing to get the amount for my chair! From the bottom of my heart, thank you very much ❤️”
Charlie’s mum and dad, Olivia and Iain add: “We are quite simply overwhelmed by the kindness and generosity of strangers, friends and family. We never imagined we would get anywhere near the amount needed in a week! We still can’t quite believe it!
“Charlie and his brother didn’t have the easiest of starts to life and the daily battles we face for Charlie can at times be exhausting and worrying. It’s hard to find words to express what this means to us as a family, and how much it will add to Charlie’s quality of life and wellbeing.
“Charlie can get very upset and frustrated about his disability and the way it limits and affects his life. This process has been very positive in that it has made him feel good about himself. He’s seen and felt how willing people are to help him and that can only mean good things for his future. His twin brother Evan has also felt it, and having seen the support from his own friends, he too has come away feeling incredibly positive.
“The difference you have ALL made is huge, THANK YOU SO VERY MUCH ❤️”
Thank you to everyone who donated, shared and helped make this happen for Charlie from everyone at Children Today!
*** Ends ***
Charlie Hall, aged 14, from Scarborough, has quadriplegic cerebral palsy, leaving him with complex needs, and his family are desperate for a new seating system as he has outgrown his old P-Pod chair.
Children Today has pledged £1,000 towards the cost of the seating system, and helped launch a fundraising appeal for the remaining funds needed to get this vital equipment.
His mum, Olivia Stirling says:
“Charlie’s had a really difficult journey. He was born eight weeks prematurely along with his twin brother, Evan, weighing just four pound four ounces.
“The boys had Twin-twin transfusion syndrome (TTTS), which wasn’t spotted in the early stages of the pregnancy, but once it was I was heavily monitored and spent eight weeks in hospital miles from home before they were born. The doctors decided that they would need to be delivered early to give them a greater chance of survival.”
TTTS affects identical twins who share a placenta and results in an imbalanced blood flow, leaving one baby with a greater blood volume than the other, which effects their growth and development in the womb.
“Charlie was actually the bigger twin – known as the donor in TTTS twins – he was receiving more of the blood, and seemed to be developing well, but Evan was just two pounds four ounces when he was born.
“Both boys spent a lot of time in intensive care and several weeks on the neonatal unit, and despite being the bigger twin, Charlie was very poorly. Against all odds Evan thrived, but Charlie was struggling.
“In those early days he cried a lot and we had lots of difficulties with feeding and sleep. Then at just seven months old Charlie was diagnosed with cerebral palsy and our world imploded.”
Initially it was not clear what Charlie’s long-term needs would be. The family had to take each day as it came, but it soon became apparent that Charlie’s needs were very complex.
“Charlie is quadriplegic, meaning all four of Charlie’s limbs are affected, so there’s very little he can do for himself and because of the spasms and stiffness caused by the cerebral palsy he’s often in pain and discomfort. Despite all that though, he’s such a bright, happy and sociable boy. He understands everything and speaks well, though his speech can be affected by his medication.”
In 2021 Charlie underwent orthopaedic surgery to help improve his range of movement and prevent his hips from dislocating, and try to relieve some of the pain and discomfort he experiences when he has spasms in his legs and lower back.
Charlie was given a seating system by the NHS to help manage his postural needs and cater for functional activities such as mealtimes and educational activities. However, it offers little comfort and the P-Pod chair he has been using is no longer big enough for him.
“We have to carefully manage Charlie’s physical needs to help ease tightness and stiffness throughout his body, he has a strict 24-hour postural management plan and without the P-Pod chair Charlie’s comfortable options are very limited.
“He can lie in his bed, but that means he’s excluded from the family, and Charlie loves nothing more than to be around people.
“Charlie absolutely loves football and music, he needs constant entertainment. Given the chance he’s the sort of boy who would always be on the go – playing sport and practising music, he would love to be able to play the piano. But unfortunately those things aren’t an option for Charlie.”
“I feel we owe it to Charlie to fight to give him the best possible quality of life. It breaks my heart when he tells me ‘I wish I could be a normal boy’ and know how hard it must be for him having such a bright mind but a body that doesn’t allow him the things he dreams of doing.
“Charlie is such a ‘people person’ and this chair would mean he can be with us all as a family, comfortably and safely. Unfortunately though these things come with a huge price tag, which is why we turned to Children Today for help.”
Any funds raised over and above what we need to provide this equipment will go towards helping fund vitally important equipment for other children and young adults with a disability or life-limiting condition.