I'm writing because I need people to know, but I can't bring myself to speak about it.

Our 15-month-old son, David, does not walk or crawl. He's got a severe developmental delay, and we've been battling central hypotonia for the past 10 months. We quickly started all kinds of different therapies, physical, visual, passive and active stimulation of all senses to give him a fighting chance at a normal life. My wife, Helena, has relentlessly exercised with David this whole time. She's the purest of souls, and I can't imagine my kids having a better mom.

Hypotonia is merely a symptom of something else, so to find the root cause, we went through every possible examination. MRI, ECG, EEG, metabolic screening, visual and hearing tests, and all kinds of ultrasounds. Everything came back negative. It left us in uncertainty, but we chose to embrace it: there was hope in it.

Results from genetic screening came back two days ago, and our little one has a rare genetic condition called FOXG1 syndrome. It's a de novo mutation, meaning a new mutation that occurred by chance and wasn't inherited, which explains why our older daughter is unaffected. It's also non-degenerative; he should not get worse and forget what we teach him along the way.

The doctor then told us that FOXG1 kids never reach certain milestones, are usually nonverbal, can't live independently, and only 15% of them somehow learn to walk. 30% don't get to celebrate their 5th birthday.

Fucking hell.

We'll do what we can to sign him up for 2026 gene therapy, which won't cure him but might make his life a bit easier. We'll continue with therapies to get him as far as we can.