Simon’s ACTA2 Journey

Simon’s ACTA2 Journey Follow for updates on Simon’s health, research & clinical trials, and fundraisers for ACTA2 Alliance.

What’s your bedtime routine?
05/27/2026

What’s your bedtime routine?

We finally got our home nursing care squared away! Day 1 went very smoothly 🩵💜
05/19/2026

We finally got our home nursing care squared away! Day 1 went very smoothly 🩵💜

Simon had a visit with the eye doctor today and his previously perfect retinal blood vessels are now showing some tortuo...
05/14/2026

Simon had a visit with the eye doctor today and his previously perfect retinal blood vessels are now showing some tortuosity. It’s been less than three months since the last exam and I think we’d hoped this condition would not progress so quickly. We don’t have another MRA scheduled yet but will talk about it with his doctors in the stroke clinic in a few weeks.

Simon’s weight percentile has been skyrocketing, teeth are coming in, and he’s making progress towards crawling. Funny how you can feel “normal” and optimistic when the kiddo is thriving on a day-to-day basis, and have it shattered at the next appointment.

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