Have you ever met Hope? Hope is 12 years old; funny, feisty, kind and caring, a little sister, big sister, daughter, friend and a very proud aunty. She faces challenges each day doing things that we all take for granted. Hope tackles everything head on and finds her own way to do lots of things. We are aiming to raise enough money, through Go Fund me and fundraising events, to buy an electric wheelchair for Hope and give her independence as she is struggling to move around herself.
Born with achondroplasia - a form of dwarfism – Hope is a Little Person and has already reached her full height at 116cm. As well as achondroplasia, Hope has a number of conditions that affect her life daily - Hydrocephalus - excess fluid around the brain – which increases the pressure between the brain and skull resulting in crippling headaches and dangerous pressure. Hope had a shunt fitted to drain this excess fluid some years ago though she still has frequent hospital admissions due to the complexity of her hydrocephalus and has had several strokes. Due to the strokes, Hope as lost half her vision in both eyes. Another complication is Chiari, which causes the stem of the brain to slip down the spinal column, this restricts the flow of fluid around the brain. An operation to remove some bones at the base of her neck and top of her spine was not as successful as it could have been because of instability in the spine and neck. If this was not complex enough, Hope has spinal stenosis – narrowing of the spinal channel – which means her legs are numb and painful.
Hope has brittle bones and has broken bones doing things that other children take for granted and cannot join in with her peers in physical activities or PE. She had had frequent fractures and struggles to walk. Every day is a new challenge for Hope but if you ask her how she is her answer would be, ‘fine ', but it's not, she lives with a level of pain that would floor most adults.
A manual wheelchair is not an option for Hope as even something as simple as pushing the wheels could cause a fracture. With an electric chair Hope would not be reliant on other people to push her and would have a lot more freedom to move around with friends and family. As Hope had reached her full height this wheelchair would be for life.
Hope needs this chair as soon as possible. We are hoping to raise funds through GFM and fundraising activities so order the chair by end of January 2018 at the latest.
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- Julie Cochrane
- Maria Politano
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