We welcomed Ethan on June 12, 2012 and felt that our family, our lives, were complete. He was perfect in every way. But as the months passed, we started to worry. He wasn't thriving. At six months, he still wasn't sitting up, but we figured he would any day. At seven and eight months, we told ourselves that babies go at their own pace, but they all get to those milestones eventually. At Ethan’s nine month check up, our pediatrician referred us to the county's Early Intervention Program. They said he had low muscle tone and noticed something unusual with his eyes. We went to a pediatric ophthalmologist, who found cherry red spots on his retinas. We went to a neurologist, who tested Ethan for a number of genetic conditions. Each condition was scarier than the one before it.
And then our world shattered. On April 26, 2013, our beautiful, perfect baby boy was diagnosed with Tay-Sachs. He was only ten months old. Our baby Ethan, our family, our dream, our balloons, were ripped away.
In the days that followed, we envisioned Ethan’s short life, his slow decline to death. We mourned for the little boy we thought we had and for all the things big and small that we realized he would never do. There would be no crawling, no first step, no first words, and no tossing a ball. He wouldn’t graduate from high school or college and he wouldn’t get married or have kids of his own. We didn’t just lose our son that day; we lost hope.
And so we created Ethan's Wish. Ethan’s Wish is a place to share the wishes that our children inspire in us. If Ethan’s soft little lips could talk, he would say that his sole wish is for no child ever to suffer from Tay-Sachs again. As his family, it is our wish that no other family should suffer the heartbreak we have endured, knowing that his condition is preventable.
What is your wish for families struggling with Tay-Sachs? What can we do to bring back the balloons?