When I was 16 years old I found out that I am a carrier of Fragile X
Syndrome. I understood what that meant for me in the future as far as
being a mother. A part of me thought maybe by that time they would have a
cure for FXS with all the research they have been doing.
It is now eight years later and now I have a child with FXS.
Still no cure.
However,
there have been some break-throughs on helping to treat different
symptoms. One trial did very well and helped many people, but then the
funding ran out.
This is hard. People are working so hard out there and then we reach road blocks like this.
Here is my sister's blog with more info and another look:
Medicine trial
I have a handsome and amazing husband, three children (two with Fragile X Syndrome), and a service dog in training. It's a crazy good life.
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