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Skotti @skottisneed.bsky.social

As the mom of a 12 yr old boy with a very rare disease that we know the exact mutation of, this is very cool. He had his 1st NIH visit at 5 wks old and last at 3 yrs old when treatment had to stop. This is the first glimmer of hope that there could be a cure for kids like him in a very long time.

may 15, 2025, 6:18 pm • 3 0

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