It’s been ages since we posted an update about Sacha. A lot has been happening in our lives—and, of course, the world—and it has been hard to find a moment to take stock. In quite dramatic circumstances—amid lockdown and a possible family Coronavirus infection, and several weeks early—on April 26 Sacha’s little sister, Niko, arrived…
First Steps in Communication
Upon entering the waiting room he points up at an EXIT sign, lit up in brilliant red. “Are you showing me the sign? I notice you look at signs a lot, especially EXIT signs. You have always loved looking at signs, haven’t you?” He looks really pleased, lets out a little laugh, and then turns…
A New Turn and a New Diagnosis
The three and a half years since we were told that Sacha had a rare genetic disorder have been an intense ride, from the incredible wave of solidarity we felt when we first told friends, family, colleagues and comrades, through rounds of intensive therapy, breakthroughs and set-backs. Covid intervened along the way, sending Sacha spiralling…
Sacha can now climb stairs!
We recently got back from Austin, Texas where Sacha completed his fourth NAPA intensive. Getting to NAPA this time around was so much more complicated than usual, due to the Covid-19 travel restrictions and safety measures, but we are so glad we made it! After eighteen months with barely any services or support, it was…
Let’s get Sacha’s therapy going again!
It’s been a hard year and a half—our hardest so far with Sacha. Covid-19 brought his main therapy programme to a halt and we had to cancel one block of intensive therapy after another. As we entered the winter months, and through lockdown, Sacha withdrew into himself. He grew increasingly anxious and apparently frustrated at…
Speech Therapist Wanted
We are looking for a dedicated and passionate speech and language therapist who can commit to working with our 4-year-old son Sacha for one hour every morning, Monday to Friday, for the next year at our home in Hanover, Brighton. Sacha has a rare chromosome condition—2q37 deletion syndrome—which affects him in many ways. While he…
Sacha fund 