We’ve just arrived back at the NAPA Center Los Angeles to start Sacha’s third NAPA intensive intervention. This time he’s finally big enough to be able to wear the NeuroSuit, which is a key part of NAPA’s pediatric therapy programme, and this is going to play a central part in his treatment over the next three weeks.

As those who have followed Sacha’s progress will probably already know, some important aspects of Sacha’s syndrome are a neurological difficulty firing his muscles, and a related difficulty sensing his body’s position in space. The NeuroSuit is custom-fitted to each child’s body each day, and worn for a couple of hours at a time. It puts pressure on key parts of the body to increase proprioception or body awareness, adding a little resistance to help get the muscles working, and helping to correct postural abnormalities. It should thus be another very relevant approach for tackling Sacha’s condition directly. Versions of the NeuroSuit are used in a few specialist pediatriac therapy centres around the world, from the US to Italy, and it seems to have originated in Poland.

It was a beautiful experience to walk back into NAPA LA after 10 months, with Sacha now able to take his little waddling steps through the facilities. We are back with almost the same “dream team” of therapists that treated Sacha on his first intensive, and it’s great to be able to check in with them and look together at how far he has come since they first decided that pushing Sacha to stand would be the best approach.

Sacha still has a lot of physical difficulties—extremely loose joints that dislocate all the time, floppy muscles and a lot of instability at the hips, and he will probably need some sort of physiotherapeutic help for years to come. But what’s most important is how well he has responded to the intensive interventions he has had so far, which leaves us with a lot of hope.

After his first session in the NeuroSuit, Sacha spontaneously walked off, much more fluidly than usual, and took himself to a little staircase which he wanted to climb. He managed it, with just a bit of assistance. Only at the start of the day we had decided upon getting Sacha to be able to step up on his own as a main goal for the intensive, and in some ways it seemed a little far-fetched. Then there he was, already trying to do it for himself. Something is evidently working!

The crowdfunder to cover this current intervention is still running. We’re almost there, but may be reduced to scrubbing drool stains off the NeuroSuits in the NAPA basement if we can’t raise another £1650 in the next three weeks.