There are three moments that define my life: The first is Roger’s birth, the second is when we found out something was wrong and the third is when we decided to change the outcome. The fourth will come when we have a cure for all kids suffering from SCN2A mutations.
My wife and I were always told the moment you see your child for the first time is surreal, a day you will always remember. That first day is forever ingrained in our minds but for a different reason. Our delivery, like the pregnancy, was a breeze, and we were staring in awe at our first child Roger in the early hours of the morning on February 1, 2014. After nursing and spending a few minutes alone with my wife and me, Roger was taken away for a routine checkup and we had a moment to ourselves, giddy at the prospect of being first time parents and embarking on this new chapter of life.
The excitement was short-lived. Within minutes, a doctor abruptly entered the room and his face said it all – there was a problem. My wife immediately began to cry before he could tell us Roger had a seizure and was being transferred immediately to the NICU. As clear as day I can recall the ensuing exchange: My wife asked, “Is he going to die?” The response was, “We don’t know.”
“…relentless pursuit of the scientific research that would give our son (and thousands of other children) a chance at the life they deserve.”
From that moment on, we began living the new reality that consumed our lives. Instead of celebrating smiles, we track seizures. Instead of teaching our son to catch a ball, we administer pharmaceuticals around the clock. Instead of hearing our son’s first word, we listen to doctors suggesting he will never talk or have any semblance of a normal life.
While in-patient shortly after birth, Roger transferred to a hospital that specialized in pediatric epilepsy, where he was diagnosed with a mutation in the SCN2A gene. We were told that the prognosis was bad, and there was not enough understanding of this disorder to make a real difference for Roger. Essentially, it wasn’t a priority among companies developing drugs, and it was one of thousands of ultra rare conditions being considered by scientists for academic research. We were told to focus on optimizing Roger’s quality of life, as he would not be like you or me.
After many agonizing nights in the hospital and a few days prior to bringing Roger home, we suddenly came to what might have been an obvious realization for some but one seemingly so foreign and frightening given the magnitude of the mountain in front of us: We did not need to accept this as his fate. We could change this trajectory.
We committed right then to turning over every leaf, reaching into every corner of the world and embarking on a relentless pursuit of the scientific research that would give our son (and thousands of other children) a chance at the life they deserve. The creation of RogCon, and its tremendous progress to date, begin the next chapter of the story…
— Alex Nemiroff, CEO and Co-founder