Our time with Isaiah was by far the best worst year of our lives. When he was about 4 months old he had his first seizure, and you can imagine our fear. Of course, we immediately sought medical advice, but at the time, the wait for an appointment with a pediatric neurologist was four months. The four-month wait was four months of sleepless nights, emergency room visits, research, and questions with uncertain answers or no answers at all. Jackson, Isaiah’s brother, was just 20 months older and was another layer of focus during this time.
Thankfully, many children outgrow epilepsy and relatively few take it into adulthood. But each case is different, and some children suffer worse scenarios. We found ourselves in the latter camp.
We were only allowed, by God’s grace, to spend 11 months and two days with Isaiah for a total of 333 days. Sudden Unexpected Death in Epilepsy (SUDEP) took him from us on May 17, 2010.
We decided in the hours after Isaiah left us that we would lean on each other, we would remain faithful to God and we would draw on a supernatural strength to make it through our grief. We would not crawl in a hole and hide, and we would not push those who loved us away because we did not want to talk about our loss. We made the decision to be full of grace and dignity.
We are inspired by a faith that demands action. Isaiah’s death, as tragic as it is and always will be, is a catalyst for our family to move forward as a beacon of hope for those that know the powerless feeling of watching a loved one have a seizure."
For those afflicted with epilepsy, we seek to be an example of strength and hope that a cure may be found. For those who want to make something of their lives, our story is just one way that small groups of people can tackle the toughest problems that surround us each and every day.
The Isaiah Stone Foundation was launched on June 15, 2014 — Isaiah’s fifth birthday.