11/01/2023
What’s A Rare Disease?
From my perspective, one of the worst parts of the “rare disease” diagnosis our kids received in 2019 was that unlike common medical issues, you are met with nothing but question marks:
- What do we do to treat it?...”We aren’t exactly sure…”
- How long will this last?...”We don’t really know…”
- How bad could this get?... “We’re doing what we can…”
But in hindsight, I now see what isn’t a question mark:
Whether a determined parent will ever give up trying to help their child.
I truly appreciate all of you with us on this mission as we hunt answers for the thousands of kids who are having their lives destroyed or taken because of this rare disease. We are making progress and we won’t give up.
/PANDAS
