Matt & Hunter (Bronx, NY)

By Sharon Gumerove

My twins Matt and Hunter are 4 and half years old! As such, they were never able to take part in the Arbaclofan/STX209 trials since you had to be 5 years old to participate. But don’t mistake their non-participation to mean that the trials meant nothing to us. I’m a member of a fantastic Facebook group of Fragile X parents, over 1500 families strong. I hung on their every post as they triumphed the successes they had on the trials; the tribulations of their traveling with the Fragile X kids to the trial sites – many of which were hours away; the hopes they had that their kids were on the actual drug and not the placebo; the joy when huge accomplishments for FXS kids were announced. And, I lived on hope. Hope that the trials would still be going on when my twins were 5, and when it became apparent that was not to be, hope that the drug would reach the market next year as promised. Hope that the drug would work for my kids too. At the end of the day, after the special ed preschools, the speech therapy, the physical therapy, the occupational therapy, about all we can do to help our kids is hope. Because we can’t fix this dastardly thing that screws up their very being — we can only love them and hope. And fight, because money shouldn’t be the reason that keeps my kids’ or any FX child from reaching their full potential. Please help us! Our kids are counting on you.

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