FRAXA Research Foundation

I was looking forward to sharing with friends and family the exciting news that our family was about to grow, come October 2021. Unfortunately, Chris and I will not be given that opportunity just yet. We are devastated to share that we lost our son, Edward Michael Smith, on March 25, 2021, after learning that our little boy was affected by a rare genetic condition called Fragile X. Fragile X affects about 1 in 4,000 males, and 1 in 6,000 to 8,000 females. Females who are premutation carriers of the Fragile X gene mutation have a 50/50 chance of passing the gene mutation to each of their children. Males who are premutation carriers of the Fragile X gene will pass the gene to all of their daughters (giving them his X chromosome) but none of his sons (his Y chromosome). The odds were in our favor that the mutation wouldn’t expand, or that the gene would even be passed on. We knew the boundaries, but we were in high spirits to prepare ourselves for welcoming Eddie, a fourth goofball to our home. After undergoing a chorionic villus sampling (CVS), and weeks of anxiously waiting, we learned that our son’s chromosomal mutation expansion was so severe, that his life would not be of much quality, nor very long. Naturally, waiting so long for the results, with no good news on the horizon was a crushing blow to us.Our son did not make it much longer after this news.

I wouldn’t wish this pain or heartache on the worst of enemies. For as terrible and soul-crushing that 2020 was, I would take a hundred 2020’s, than live through 2021, had I known what challenges we were about to face. In the wake of such anguish, Chris and I are determined to find a way to honor and memorialize our son, and somehow find a silver lining in such an unfair and tragic situation. As such, we have set up a GoFundMe page, with a goal of $1,000 that will be sent directly to the Fragile X Foundation for further research about this mutation in the FMR1 gene. "The FMR1 gene makes a protein (FMRP) that is important in brain development. Individuals with Fragile X syndrome have a deficiency of this protein" (National Fragile X Foundation).

Ultimately, we hope we can pay this donation forward, and support other expectant parents and families that have found themselves in our shoes. We understand times have been incredibly difficult and financially crippling throughout the pandemic, so even as much as a one dollar contribution would mean everything to our family.

From the day we learned of our son’s fate, our parents reiterated that the love Chris and I have for one another and our family will get us through the most difficult of challenges in life. There have been quite a few sleepless nights, and plenty of agonizing tears; but we will prevail, and we will move forward with our heads held high with the memory of Eddie in our hearts.

At this time, we just ask we ask to hold on calls and texts for a little while, as we continue to work through and process this loss. Time will help us heal, but we are asking for prayers for our family while we continue to grieve, and ask you to help pay it forward by doing something selfless for another individual - be it buying someone’s coffee in the drive-thru, or just texting a friend you haven’t talked to in a while.

In dark times, the world needs small rays of light. While we didn’t have the chance to meet our son, we are already learning lessons from him to always, always search for the light, even in the darkest of places.

Please feel free to share this post to raise awareness about Fragile X, and help bring this rare genetic condition to the forefront of discussion.