Sacha is 7 years old and lives in Brighton. He has a very rare genetic disorder called 2q37 deletion syndrome, which means he is likely to grow up with cognitive disabilities and physical difficulties. But the range of possible outcomes is wide, and there are many factors that can improve or worsen the prognosis.

We know that what happens early in a child's life can have a profound effect on outcomes. Defying initial prognosis, Sacha responded remarkably well to intensive blocks of paediatric therapy at NAPA Center: the first enabled him to stand for the first time; the second got him walking; in the third, he learned to climb and descend stairs. More recently, we have witnessed his gross motor skills start to flourish, and he is learning to climb ladders and even ride a scooter.

In addition to NAPA, Floortime therapy has helped to lay some crucial foundations for communication. Every round of intensive therapy has been a tangible boost not only to Sacha's development, but also to his happiness and confidence. Without these therapies, it would have been a much longer struggle for Sacha to reach such milestones, and it is very possible that some would not have been met at all.

Sacha is currently non-verbal and finds communication in general extremely challenging. As he gets older, this is causing him to get increasingly frustrated. Recently we have found an opening with Augmentative and Alternative Communication (AAC), and Sacha is beginning to point at symbols on an iPad to request motivating items, like food. Sacha's learning difficulties means that he requires intensive input to consolidate every single skill, and we need to get this input while he is young and his brain is still developing. We are thus fundraising for further rounds of holistic intensive therapy, especially targeting communication.

For more information on Sacha, 2q37, and how funds will be spent, please visit here

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