Triple ⁂

Learnt today that the kid (age 2,5) might need ear aids after all, although we had ruled this out a few months ago. We are already in the process of getting her glasses and an orthopedic corset, and I can't help but think that this is all a bit a lot. While knowing it won't get better.

#MPS1 #HurlerSyndrome

Oct 7 at 3:30pmWeb
Show threadChristoph KoeberlinOct 7
@triple Much love, Jérémy! ❤️ It’s hard, and you’re doing great.
Show threadTriple ⁂Oct 8
@koeberlin Thanks Christoph, it means a lot!
Show threadRonanOct 7
@triple oh that's tough. It's so hard as a parent to watch them go through things that you can't help with. But if there's a silver lining it's seeing how even at a tiny, young, age they can get over things. Wish you all the best
Show threadTriple ⁂Oct 8
@ronanmcd Yes, that's the thing, for now she's got over everything. At the end there is mostly one factor that can't be erased and it's pain when there is some.
Show threadRonanOct 8
@triple this is awful, hope you are all ok
Show threadTriple ⁂Oct 9
@ronanmcd Thanks, we’re trying to!
Show threadFlorian Schroiff Oct 7
@triple it sure sounds like a lot. I wish you strength.
Show threadTriple ⁂Oct 8
@flori Thanks a lot Florian!
Show threadJorge BejaranoOct 7
@triple good luck. I hope everything will be ok 🙏
Show threadTriple ⁂Oct 8
@guayabito Thanks a lot Jorge!