This is Sacha. He’s six years old and a bit of a character. He loves to laugh and to make others laugh too, drawing people into play with his infectious giggle. He likes to sing, play music and read, and is a great swimmer, splashing around in a pool with a confidence and coordination beyond his years.

Sacha has a rare genetic condition called 2q37 deletion syndrome. This has complex and profound effects on his development, from the physical to the cognitive, and it makes most things much harder for Sacha than for typically-developing kids.  In his early years he struggled to stand, crawl and walk; he still struggles with movements that involve knee flexion. He never learned to play like a typically-developing child, and remains largely unable to communicate, either verbally or by sign.

But when he has been able to access the right sorts of professional help, Sacha has made remarkable progress. On the basis of crowdfunding by his parents and some dedicated supporters, Sacha received targeted therapeutic interventions from the likes of the NAPA Center, which first helped him to become mobile and able to explore the world; MAES Therapy, which worked on stimulating cognition and problem-solving; the Floortime Center, which helped Sacha to develop more complex social interactions. Time and again, professionals working with Sacha have been surprised at the extent to which the right therapy can improve his prospects.

As Sacha grows and develops, his needs shift. After defying expectations in terms of his gross motor development—largely a result of the intensive CME and physiotherapy he has received at NAPA Center over the years—we are now focusing on therapies that target communication and cognition. Our first goal is to fundraise for ongoing Floortime therapy, to give Sacha the biggest possible boost to his communication, social interaction and play skills. Our second goal is to fund 1-2 NAPA London intensives a year, to continue the programme that has doing so much to help Sacha’s all-round development. This time the focus—as well as CME—will be on Sensory Integration OT, fine motor control in the hands and speech. Sacha longs to be more capable on these levels, and his frustration is palpable.