Meet Charlie
Specialist seating system
14-year-old Charlie was born eight weeks prematurely along with his twin brother, Evan, weighing just four pound four ounces.
Charlie and Evan had twin-twin transfusion syndrome (TTTS) – a condition that can affect identical twins who share a placenta and results in an imbalanced blood flow. The condition results in one baby getting a greater blood volume than the other, which effects their growth and development in the womb.
Charlie weighed just 4 lb 4oz when he was born
Olivia, Charlie’s mum explains:
“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.
“After delivery, both boys spent a lot of time in intensive care and the neonatal unit. Against all odds Evan thrived, but Charlie was struggling. Despite being the bigger twin, Charlie was very poorly.
“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.
Olivia says:
“Charlie is quadriplegic, meaning all four of his limbs are affected, so there’s very little he can do for himself. 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”.
In 2021 Charlie underwent orthopaedic surgery to help improve his range of movement and try to relieve some of the pain and discomfort he experiences when he has spasms in his legs and lower back. He was given a seating system by the NHS to help manage his postural needs and cater for functional activities, but it offers him little comfort.
Charlie and his twin brother, Evan, are very close
Olivia continues:
“The options for Charlie to be comfortable 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.
“Come the end of the day Charlie needs to be able to chill out and get comfy. The same way we would sprawl out on the sofa after a long day, he wants to just relax comfortably.”
“Charlie is such a ‘people person’ and this chair means he can be with us all as a family, comfortably and safely. It’s hard to find words to express what this means to us as a family, and how much it’s improved Charlie’s quality of life and wellbeing.”
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