Trek Friesth (Chandler, AZ)

by Sarah Lemberg Friesth

Our story is not unlike so many other families dealing with Fragile X Syndrome. Our son, Trek, was diagnosed at 22 months old; just shy of turning two. The time when, for most children, the world becomes, in a small way, navigable. But, for Trek, the frustration was just beginning.

The devastation and heartbreak we experienced was beyond comparison. What was once a label you put on a package and a letter found at the end of the alphabet were at an instant combined-and it became a language we did not understand.

But, we fought hard for services. We learned a foreign language we never thought we’d speak. We reached out and, thank God, found a community we had no idea existed. Because of the pioneers that came before us, we found a path. The generations and sweet souls that lead the way, helped pave the road for our family.

We made our mecca to the MIND Institute in Sacramento. We enrolled in the trial studies for kiddos Trek’s age. We imagined a day when the trial of STX 209 was not a “clinical trial”, but rather a reality for ALL of us.

And, then the news came about the termination of the study, and we were devastated. We were broken hearted for our friends and “our” kids, because every child with FX is in a sense “my” child. The hope we pinned on this trial study was in an instant taken away.

We never had the chance to witness Trek on the trial medication, but we pray and hope that one day we WILL have the chance to at least try.