We had another loss in our Gaucher 2/3 community today. An adorable little boy with beautiful brown hair and big eyes. I would look at his pictures often because he shared so many mannerisms and looks that Hannah used to do.
I’ve been a part of this ‘community’ now for almost 4 years. I have gotten to know quite a few families with kids affected by Gaucher’s 2/3, and I have seen so many of these children lose their battle because of Gaucher’s Disease. I feel like the scale has tipped for me – I know more parents who have lost children to Gaucher’s than I know parents still fighting for their Gaucher kids.
It shouldn’t be that way.
Then again, we shouldn’t have to lose our children in the first place.
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