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Kael's Story

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Kael's Story

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Introduction	I'm mother to Kael, who lives with Dravet Syndrome. He was born on 2/20/07, a normal baby. But, on August 4, 2007, our world changed. Kael was sleeping next to me while I read. I noticed a sound and realized that he was shaking. When I picked him up, I saw that his movements were rhythmic and I realized it might be a seizure...Called the ambulance and we rushed to the hospital. That day, he had a 35 minute Tonic-Clonic Seizure (aka Gran Mal). The drs ran every test imaginable, but everything came back normal. Two months later, he had a 2 hour seizure and had to be put on a respirator because he was not breathing well. When Kael was 10 months old, he was diagnosed with Dravet Syndrome, a rare disease (only about 1 in 20,000 births) whose primary feature is intractable epilepsy. Presently, he has 2-3 GTC's a week, as well as weekly myoclonic and focal seizures. He will never grow out of it - his seizures will always be part of his life. He will likely regress developmentally and be dependent on us throughout his life - but we are hoping he will defy the odds. Michael and I are on a mission to find a cure, not just for Kael, but for all of the Dravet kids.

Introduction

I'm mother to Kael, who lives with Dravet Syndrome. He was born on 2/20/07, a normal baby. But, on August 4, 2007, our world changed. Kael was sleeping next to me while I read. I noticed a sound and realized that he was shaking. When I picked him up, I saw that his movements were rhythmic and I realized it might be a seizure...Called the ambulance and we rushed to the hospital. That day, he had a 35 minute Tonic-Clonic Seizure (aka Gran Mal). The drs ran every test imaginable, but everything came back normal. Two months later, he had a 2 hour seizure and had to be put on a respirator because he was not breathing well. When Kael was 10 months old, he was diagnosed with Dravet Syndrome, a rare disease (only about 1 in 20,000 births) whose primary feature is intractable epilepsy. Presently, he has 2-3 GTC's a week, as well as weekly myoclonic and focal seizures. He will never grow out of it - his seizures will always be part of his life. He will likely regress developmentally and be dependent on us throughout his life - but we are hoping he will defy the odds. Michael and I are on a mission to find a cure, not just for Kael, but for all of the Dravet kids.