Evan Anderson (Marksville, LA)

by Tammy Anderson

For my family STX209 was such a saving grace and a peace of mind about Evan’s future.  Evan who 11 is my grandson/adopted son.  We have been his full time care givers since he was 2.  He was diagnosed with FXS when he was 4.  Just like other FX families it has been a long, rough battle.  We not only have the concerns of raising a child with a mental disability but we know that we don’t have as long to spend with Evan as we should because of our age.  During our trial with STX209 we were at a place where we didn’t worry so much.  With STX209 we felt “he’s going to be ok”.  He was doing so much better at coping socially, academically and with his sensory  issues.  When we got the news that it was over and he would no longer have his saving grace it was absolutely devastating to us.  3 weeks after titration he is doing ok.  All of the old issues have returned and we are back to square one.  I am in daily pray that STX209 will be available again soon.  How sad that there is a drug that does such awesome things for FXS children and we can’t get it.  In the mean time I will work hard at raising awareness for Fragile X Syndrome.