Project Description

Alex’s Story

Alex is the youngest of our three children. The pregnancy was healthy and full to term. On July 8, 2005 our beautiful and seemingly healthy little boy was born. At 4 months of age that all changed and our world was turned upside down and sideways. Alex had his first seizure. We were told that this sometimes happens from fever, and it would most likely be a one time event.Two months later he had another,and another, and another. Each seizure getting stronger and lasting longer. Alex was having several different types of seizures as well. Some brief others violent and lasting nearly 2 hours. Not satisfied with the answers and treatments we were given,we went for a second opinion.With countless tests that were done and came back normal one did not. At 20 months old Alex tested positive for SCN1A mutation. Alex was diagnosed with Dravet Syndrome.

Dravet is a cruel opponent in a never ending battle. It doesn’t fight fair, it knows your every weakness, and it kicks you when you are down.That being said, we have a warrior in our family! He is a self proclaimed “tough cookie” and his name is Alex Dalpe. In his first two years of life Alex suffered from thousands, yes thousands, of small seizures a day and several large seizures per week. Alex is cognitively delayed by about 4 years. His speech, gross and fine motor skills are impaired. He was on the ketogenic diet for over 2 years. Alex visits doctors and specialists more times in one year than some do in a lifetime. He has been admitted into the hospital for emergency circumstances more times than everyone in our family put together. He has been through countless tests, been poked and prodded more times than I can even count. Through all of this He is our inspiration. Though Dravet may challenge him daily and sometimes beat him up both physically and mentally to the point of extreme exhaustion, there is not a day that goes by when he has not had a smile on his face, kind words on his lips or love in his heart for everybody. Even those that are not so kind to him. Alex is our Hero and our Warrior in this battle we fight called Dravet. And we are determined to win.