Our son Corey is now 6 years of age. Following a traumatic birth, Corey was diagnosed with Cerebral Palsy, Polymicrogyria (a brain malformation), epilepsy, hypermobility, visual impairment and development delay. With intensive therapies and much determination, Corey now attends mainstream school with an Education and Health Care Plan in place, and has 1:1 support throughout the day. He has use of a wheelchair and specially adapted furniture, cutlery, clothing and footwear. He follows a strict Physio and OT programme daily. Corey is a funny, sweet boy with such a loving personality. Although he is now starting to notice that he is different to his siblings and peers, he still pushes himself to do his absolute best. He doesn't complain.
Unfortunately there are no cures for his conditions and they are lifelong. He does his very best to deal with them, but sadly we have been unable to control his seizures with medication. The seizures are increasing in quantity and length and there are no known triggers. They can happen whenever and wherever. A PulseGuard monitor would not only give us peace of mind, but alert us to physiological changes before a seizure occurs. This way we can prepare, and ensure Corey gets the help quickly and efficiently. These monitors reduce the risk of SUDEP drastically. They cost over £1100.
Corey's body is also unable to support itself without some assistance. As Corey is growing rapidly he requires a special needs car seat. This has been supported via his OT and he has his assessment and fittings for the Carrot 3 on 9th May. The seat will last him for many years and will be made to meet all his physical and safety needs, but will cost in excess of £2000 (increases with all necessary extras e.g. Foot plate, 5 point harness, lateral supports etc).
Myself and Dom have given up our careers to support Corey and the family. They are priority. This means we no longer have savings and live with a reduced income. We cannot raise this money alone.