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

@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
@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.
@triple this is awful, hope you are all ok
@ronanmcd Thanks, we’re trying to!