My Dad and I will be running the Brighton half Marathon on the 23rd of February and we are running to raise money for our beautiful cousin and great niece, Felicity.
When Felicity was 3 months old, health professionals were concerned about the size of her head. She had lots of different tests and investigations done urgently. The doctors found she has 3 different brain conditions (absence of the corpse callosum, polymicrogyria and subcortical heterotopia) .
These brain conditions have also caused other difficulties including global developmental delay, drug resistant epilepsy where she will have hundreds of seizures a day, clonus, an un-safe swallow meaning she has to be tube fed via her peg, sever reflux and she is statemented blind. Felicity has very low muscle tone and has splints for her legs and is wheelchair dependant. Felicity is now 4 1/2 years old, and still acts like a 0-3 month old. She cannot hold her own head up so needs specialist equipment.
Unfortunately the current home that Felicity, her parents and brother live in is unable to be adapted for Felicity’s needs so they will be moving in with Felicity’s Grandparents. They have planned to build a purpose built extension on to the side of their house to meet all of Felicity’s needs. This will include hoist, a lift and wet room. Felicity will also need purpose built equipment especially made for her . They will get some help financially from the council but they will need to raise considerably more . All the money we hope to raise will go towards this build. These adaptions won’t only help Felicity, they will also help her parents care for her safely.