Doctors couldn‘t explain why our newborn was dying. Weeks later they discovered one of the world rarest genetic disorders
My 8-year-old son, Henrik, is living with one of the world’s rarest genetic metabolic disorders: Cobalamin F Deficiency (cblF).
He survived cardiac arrest at birth, a collapsed lung, and spent four months in intensive care before doctors finally discovered what was wrong.
I’ve learned that almost nobody has ever heard of this disease, and that’s one of the reasons I wanted to share Henrik’s story. Raising awareness is incredibly important to us because every bit of knowledge about rare diseases has the potential to help families in the future.
If anyone is interested, I’d be happy to share Henrik’s full story and answer any questions about his condition or our journey as a family.
Thank you for taking the time to read this. ❤️
u/Henry19891989 — 14 days ago