Stories

Six-year-old Neve has multiple problems. She has a rare and severe form of epilepsy called Dravet Syndrome which is very resistant to drug treatment. Seizures occur daily and can be triggered by a range of things such as sunlight, over exertion, over-excitement and illness. She is also autistic and requires all-day care.

Blake has Spina Bifida and Bilateral Talapese, plus various neuropathic conditions. He tries as much as he can to be active and wants to walk with his crutches, but finds he can’t as his mobility is deteriorating.

Fifteen year old Georgia was born with a rare skeletal dysplasia, known as dwarfism. Her bones permanently fused together when she was a toddler. She used to walk unaided but her condition worsened. Now she is unable to bear her own weight or lift simple objects like a kettle.

Freddie has a rare congenital condition called Bi-lateral Perisylvian Polymicrogyria. Even the most basic tasks like sitting, walking, eating and drinking are extremely difficult for Freddie.

Sophie has Spastic Quadriplegic Cerebral Palsy. She is unable to stand or sit and finds it difficult to use her hands. That makes her totally dependent on someone else to participate in almost every aspect of daily living.

In December 2011 Sophie was suddenly taken ill. A blood clot had developed on her spinal cord leaving her paralysed. She was diagnosed with Cobb Syndrome. Her world was turned upside down, just at the time she should have been enjoying a carefree life and her youth.

Shaye was born with Duchenne Muscular Dystrophy. He could walk up until two years ago and has since become fully dependent on a wheelchair to get around at home, at school and in his local community.

Matthew was born with Cerebral Palsy and Spastic Quadriplegia. He is unable to walk, crawl or sit upright on his own for a long time without support. He needs assistance in many day to day activities around the home as he has limited hand skills. This impacts on his education as typing is a laborious task for him, so he has a scribe in lessons at school and his mother fulfills this role for him at home.

In 2006, (aged 11) Jagdev suffered an Arteriovenous malformation (AVM), changing his life dramatically. After this he became a wheelchair users and dependent for all aspects of his care.

Finlay is a young man with cerebral palsy who cannot use his legs. We provided Finley with a power wheelchair which helped to transform his life.