In 2021, Charlie Hall, who has quadriplegic cerebral palsy, underwent orthopaedic surgery to help improve his range of movement and prevent his hips from dislocating, as well as relieve some of the pain and discomfort he can experience 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. But it offers little comfort and he’d outgrown the P-Pod chair he had been using.
At a cost of more than £4,000, though, Charlie’s family turned to Children Today for support in getting a specialist seating system.
The children’s disability charity pledged £1000 towards the seating system and launched an urgent appeal to raise funds for the remaining amount needed.
Charlie, his family and the Children Today team were blown away by the response, with donations flooding from friends, family, organisations and even strangers. Within just a week the remaining funds needed to cover the cost of the specialist seating system were raised!
Charlie’s mum, Olivia Stirling, said:
“Charlie’s had a really difficult journey. He was born eight weeks prematurely along with his twin brother, Evan, weighing just four pounds and 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 away 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 affects 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 in 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. 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. Despite all that though, he’s such a bright, happy and sociable boy and he understands everything.
“Come the end of the day Charlie needs to be able to chill out and get comfy. In the same way we would sprawl out on the sofa after a long day, Charlie wants to just relax comfortably. 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. He’s such a ‘people person’ and this chair will mean he can be with us all as a family, comfortably and safely.
“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!
“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 well-being.
“Charlie can get very upset and frustrated about his disability and the way it limits and affects his life. This process has been really 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. Evan has also felt it, and having seen the support from his own friends, he too has come away feeling incredibly positive.”
Emma Prescott, charity director at Children Today, said:
“We are so thrilled that Charlie’s appeal has been such a resounding success and that he’s now able to get this vital equipment. Unfortunately, specialist equipment is so often prohibitively expensive but you just can’t put a price on being comfortable.
“£3,000 is such a lot of money to raise, but we’ve been blown away by how generous and selfless the people of Yorkshire have been, from close friends and family to old acquaintances. Even complete strangers who heard his story on the radio. It just goes to show how wonderful people can be when we rally together for the good of others.”
To find out more about Children Today, to apply for support or make a donation, to help more children like Charlie, please visit: www.childrentoday.org.uk.