Joey’s Journey

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Hailsham

Joey was born with congenital cytomegalovirus which has left him with quadriplegic cerebral palsy, dystopia, severe extension and spasticity. He is unable to move, play, eat or drink without support from those around him and his equipment. He also has polymicrogyria which has left him with epilepsy and a large cyst on the left hand side of his brain. Joey has functional visual difficulties and is severely long sighted as well as deaf in his left ear.

Despite all this, he is a happy and fun loving little boy who loves life, messy play, cycling and Peppa Pig. He can also be very cheeky!

Because of Joey’s needs we are having to adapt our house to accommodate equipment and hoisting. We are creating a wet room and bedroom downstairs for him to enable him to have greater access to the things that we take for granted like having a bath or shower and using the toilet. Currently I am lifting him for everything and he isn’t far off my height and heavy. This limits his activities at times as it’s getting so difficult to put him in equipment like his bike, wheelchair, walker and standing frame!

We had previously started to raise money and managed to raise nearly four thousand pounds. We have also managed to extend our mortgage for some of it as well receiving the government DFG but we still have a way to go in order to facilitate Joey and both his current and future needs.

Now that we have started work, we have realised that the drive and garden also need work to become accessible to Joey and accommodate his wheelchair and equipment.

We are so lucky to be receiving this help from Sullivan’s Heroes to help us reach our goal and start the work as soon as possible.

Sullivan’s Heroes is a charity offering support and financial assistance for families raising essential funds for vital home adaptations for a disabled child, to continue to care for their child at home, safely and with dignity.

Joey was born with congenital cytomegalovirus which has left him with quadriplegic cerebral palsy, dystopia, severe extension and spasticity. He is unable to move, play, eat or drink without support from those around him and his equipment. He also has polymicrogyria which Has left him with epilepsy and a large cyst on the left hand side of his brain. Joey has functional visual difficulties and is severely long sighted as well as deaf in his left ear.
Despite all this, he is a happy and fun loving little boy who loves life, messy play, cycling and Peppa Pig. He can also be very cheeky!
Because of Joey’s needs we are having to adapt our house to accommodate equipment and hoisting. We are creating a wet room and bedroom downstairs for him to enable him to have greater access to the things that we take for granted like having a bath or shower and using the toilet. Currently I am lifting him for everything and he isn’t far off my height and heavy. This limits his activities at times as it’s getting so difficult to put him in equipment like his bike, wheelchair, walker and standing frame! We now also need to adapt the driveway and more of the garden.
We had previously started to raise money and managed to raise nearly four thousand pounds. We have also managed to extend our mortgage for some of it as well receiving the government DFG but we still have a way to go in order to facilitate Joey and both his current and future needs.

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