Joanne Seager
Jakey's Have a NICE day Sponsored Walk
Fundraising for National Institute of Conductive Education
Story
At 17 months old, Jakey was diagnosed with a condition called Pachygyria. The word can be broken down into 2 parts - "pachy" meaning fat/broad/thick and "gyria" meaning folds in the brain. It is a neuronal migration disorder and essentially his brain didn't develop correctly. The prognosis was that he may or may not walk/talk, will probably have moderate to severe learning difficulties, has a chance of having seizures and will have global development delay. This is a very rare condition and all cases are different depending on the level of brain abnormality. There is no medical treatment so supportive treatments such as physiotherapy are what he receives. Jakey is now 3 years old and can sit independently and is an amazing bottom shuffler but cannot crawl, stand or walk. He is currently non-verbal but has his own way of communicating! He is such a happy and determined little boy who makes his family proud on a daily basis when he achieves "inchstones' as opposed to milestones!!! Jakey has recently started to attend weekly sessions at NICE and the input from the conductors is already making a huge difference to his life! He will take supported steps in the sponsored walk to raise money for this amazing cause!
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