Sacha is 4 and lives in Brighton. He has a rare genetic disorder called 2q37 deletion syndrome. This 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.

Defying expectations, Sacha has responded remarkably well to intensive blocks of paediatric therapy: the first enabled him to stand for the first time; the second got him walking; in the last, he learned to climb and descend stairs. Every round of therapy was 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.

Sacha is currently non-verbal and only rarely communicates with a couple of basic signs. While he is able to use his hands for some things like feeding, he has always struggled to use them in play, and this has had a serious impact on his development. Communication often follows upon the development of play skills, so these two difficulties are linked. There is now a consensus among professionals who have worked with Sacha that the current frontier for his development lies in occupational therapy to help get him playing and interacting in more complex ways. We are thus fundraising for another round of intensive therapy, focusing this time primarily on occupational therapy.