Project Description

Will’s Story

Will was born on June 24, 2009, a healthy boy at 8lbs 9oz. When he was five and a half months of age, our life as we knew it, took a detour. Will was lying on the floor with some toys when he began having a seizure. When the paramedics arrived, Will was still seizing. What seemed like an eternity, Will’s seizure lasted about twenty minutes. A few weeks later, Will had another seizure. When we eventually saw the neurologist, she didn’t seem very concerned, but agreed to test Will for Dravet Syndrome.

The results of the test took about three to four weeks. During this period of time, Will had a few more seizures. Fortunately, these were not near as serious as his first two. They stopped on their own after a few minutes.

Our neurologist’s nurse called and gave us the news that our son had tested positive for the gene associated with Dravet Syndrome. Until a few weeks prior, and besides some sleeping issues, our baby was completely healthy. The next few weeks were dark for us. The future that we had planned for our family was now unknown. We questioned if we could handle this.

Eventually, we accepted our path, and we decided that we had to be strong for Will. Will’s life is different from other children. He will continue to have seizures and limitations. Because of the risk of triggering a seizure, we can’t take him out on a warm sunny day, we don’t really travel with him; we can’t leave him with just anyone. This has been a learning experience for all of us.

We consider ourselves lucky though. With an early diagnosis, hopefully Will will benefit from proper treatments and therapies during his early developmental years. We are thankful for this perfect little guy, for his loving big sister, and for a Faith that guides us along this journey.