An Exmouth five-year-old who has a neuro muscular condition which affects his eating, swallowing, moving and breathing – to the extent he has a tracheostomy and needs to use a ventilator 24-hours a day – has grown out of the specialist chair that is the only place he is truly comfortable.
The seat used by William Prosser is the only place he has to sit which doesn’t cause him pain, as even his bed doesn’t support him enough to sit up for long. Diagnosed with Myotubular Myopathy shortly after his birth, his parents, Adele and Kieron, call him their ‘miracle’ as they were told by doctors that he wasn’t expected to reach his first birthday. Now they take each day as it comes with the brave youngster they describe as a ‘normal little boy in a broken body’, adding that his doctors say he is an intensive care patient living at home.
The comfortable chair supports William’s arms enough so that he can use an iPad or communication aid if his voice fades due to his tracheostomy being changed. As the seat is mobile it means he can enjoy family time with his parents, 16-year-old sister Rhianon and new baby brother James, either in the house or exploring the garden, which is something he loves to do. However, a growth spurt means he will soon no longer be able to use it and as a larger replacement would cost £2,638, his parents turned to Newlife Foundation for help. Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.
Now local heroes are needed to come forward to help make this happen, so William can continue to enjoy the simple pleasure of sitting without pain.
Mum Adele said: “William has a tracheostomy and ventilator to help him breathe, but it doesn’t usually stop him talking and he loves to sing. Singing has become his trademark. He remembers the words to lots of songs, he’s amazing. He has grown a lot though and we’re not sure if it’s part of his condition or not, but he is in age ten clothes and is growing out of all the seating we have for him, including his chair for school and his electric wheelchair. It’s really difficult as it’s all happening at once.
“It is the comfortable seat that is his favourite though – he lives in it when he’s in the house and we take it with us to the hospice. When we go camping or visit family, the chair has to come too.”
Because William’s condition means he is unable to walk, he has developed a hip displacement, curvature of the spine and his bones have become weak and flexible to the degree that when he is turned over from one side to another at night his chest bone will moves sides too, causing more pain. William has to have his position changed every few hours throughout the day and night as he is unable to do this for himself.
The specialist comfortable seat gives William all the extra support he needs to relax and as it is mobile and easily transportable it means he never has to miss out on family fun.
Adele added: “If he didn’t have this comfortable chair I don’t know where he would sit, it’s just perfect for him, it’s the best chair he’s ever had – he just needs a larger version. It’s so difficult for him to get comfortable and seeing him in pain is heart breaking for us as a family.”
At Newlife we need donors and fundraisers who want to really make a difference, helping us transform William’s everyday life. To find out how you can support William, go to www.newlifecharity.co.uk/devon read his story and click the ‘Donate Now’ button. Alternatively, contact the Newlife County Liaison Team on 01543 431 444, email [email protected] Newlife guarantees that 100 per cent of monies donated or fundraised in Devon will be used to specifically help children with disabilities and terminal illness in the county. Any money raised surplus to requirements for William will be used to help other local children as he is currently one of 15 in Devon with equipment needs of £39,942.
Pictured: William Prosser