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 his inability to communicate. While his mood has improved as Covid restrictions have eased up, we have lost significant ground compared to where we were with the successes of his earlier blocks of intensive therapy.
The good news is that we are finally able to travel again. The US embassy has granted us an immigration exemption on medical grounds, and we have booked into the NAPA Center for 3 weeks from 16 August. On the basis of experience, we have every reason to hope that getting back to NAPA will give Sacha the sort of boost that it has on previous occasions. As well as making a major difference to Sacha’s developmental trajectory, each block of intensive intervention has improved his confidence and mood.
Goals for Sacha’s new round of therapy
1. to get communicating again.
On his first trip to NAPA when he was just 1 year old, Sacha first began communicating with a couple of words and signs. The “more” sign that he established there became a general way of communicating desire or affirmation: more food, but also “I want” and “yes”. This basic ability helped him to participate actively in a relatively wide variety of social situations. On his second trip, a particularly talented therapist, Shannon, managed to get Sacha communicating in a play context in a way that we had never seen before. These previous gains evaporated under Covid conditions, despite some NHS input in Sacha’s nursery context, and now, aged 4, he is essentially unable to communicate at all. With the daily sessions of an intensive intervention, we are hoping to re-establish enough basis for communication to give him the motivation to keep trying to sign and speak.
2. to learn to climb and descend stairs.
Sacha has been walking fairly well, albeit with an unusual gait, for some time now, but the weak, unstable knees that typically come with 2q37 Deletion Syndrome have kept stairs out of reach. We work on the movements every day at home, trying to build strength and stability, and stairs have gradually started to seem an increasingly realistic goal; intensive input from neurodevelopmental physiotherapists will no doubt get us much closer, or perhaps all the way there.
3. to start using hands more actively.
The neurological effects of Sacha’s condition that have made the rest of his development so difficult have left his hands weak and uncoordinated. He has been able to use them for things like feeding and for occasional play since about age 1, but he finds precise movements hard and has little finger strength. This seems to have contributed to a self-reinforcing pattern of discouragement from play and any activities that require hand use, which is a significant obstacle to learning. In contrast to the self-motivated investigation of the world that we see in typically-developing kids, Sacha tends nervously to shy away from investigating objects, as if assuming from the outset that his hands will fail him. Somehow we need to break out of this pattern, and on the basis of previous experience, daily intensive specialist input is probably our best hope.
We’re crowdfunding again to cover the costs of this therapy. We still have some way to go to fund a proper restart of Sacha’s therapy programme. As always, we’re profoundly grateful for any help you can give: contributing, helping circulate, or helping us organise fundraising events.
Our current crowdfunder is here: https://www.justgiving.com/campaign/HelpSachashowDNAisntdestiny
You can also contribute with your own fundraiser (such as a sponsored event, for example), by clicking “Start fundraising”.
There are some other ways of donating detailed here: https://sacha.fund/donate/