Jake is a 9 year old boy who has an extremely rare, genetic, neurological disorder which is life limiting. It is degenerative in nature, so he declines as he gets older.
He has such a zest for life and lights up any room he enters. He is always smiling and looking for ways to cause mischief.
I want to use this space not only to share his journey so far and beyond but also as a space where I can write what’s been stored in my head for so long. I would like to think it may help other parents in similar positions or to help raise awareness. We hope you enjoy 👋
Jake's PCH2D Journey 