Nathan & Zakira Freedman (Newton, MA)

By Aimee & Josh Freedman

How do we even begin to say what STX209 has done for our family, what it has done for our son, our hope for what it could do for our daughter?

Parents of children with special needs are often told that their feelings of grief are similar to the feelings of a death of a loved one. You need to mourn the life that you had envisioned for your child and your family and start a whole new dream, or reality. We had already said our goodbyes to the life we thought we were setting ourselves and our kids up for, we were moving on and looking to the future with hesitation and a good dose of fear.

When we found out that we could participate in a drug trial for our son, a drug that was already in Phase III, we really went after that opportunity and we were so excited for the chance to help get something going for all of the families that are affected by Fragile X Syndrome. After 20 months of watching Nathan progress incredibly, we are now told it will all be taken away…sorry folks no more money for your child to keep taking a medication that has been absolutely life changing.

Now we must mourn again, once simply wasn’t heartbreaking enough. Now that we have seen our child happy, learning how to read, talking so much, participating in ways we had only imagined were possible, having haircuts that we don’t have to hold him down for, waking up happy instead of screaming…now that we have seen it we will have to watch it all be taken away. We have been watching, listening and taking in all that he is doing as the gift that it is because it is now so close to being taken away from us and from him. How do we watch our child regress?  How can anyone watch their child regress into their world that is so hard and uncomfortable for them that all they can do is yell?

We have to believe that all this research is to a point, all the blood work was to a point, all the paperwork and schlepping…all of it has to be for a point. There has to be a solution to this. So many families have seen wonderful results on the STX209 and all of their worlds are being turned upside down as we all try to figure out what to do next. Who will help our children, our families?   So much time, money, blood, sweat and tears have been invested. This medicine can’t just go away. When your child has a genetic diagnosis that makes life so challenging for them, one of your only hopes is medication and research. Families are waiting for STX209 to be approved by the FDA so they can give it to their kids. We are waiting for it to be approved so we can give it to Zakira, Nathan’s older sister.