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Our son Luke has Dravet Syndrome which is a “catastrophe form of epilepsy” genetically based. At the age of 6 months our lives changed forever, as we began to live with the unpredictability of this disease. The impact on Luke was devastating, as for our daughter, and us as parents. Feeling powerless was a daily feeling. Despite this Luke’s strength, resilience, and fight for his life empowered us. Luke was not diagnosed until 19 years of age, as genetic testing became available . It was bittersweet and a relief at the same time. We finally had answers to many prolonged seizures, with up to 300 seizures a month by the age of 3 years. Most were nocturnal so sleep was not at the top of our list however hypervigilance was. Luke’s development declined as time went on, autistic traits were apparent, as changes in his physical stature, all part of Dravet Syndrome. Today, at 26 years of age Luke resides in a home for medically fragile adults where he is doing great. A placement that came by surprise to us 3 years ago after moving to a smaller community. We miss Luke every day however know he will be well cared for in future years. We remain an active part of his life. We have been truly blessed. Life is so precious as we have come to know too well, nothing is permanent. Keep the light shining Luke, you continue to bring much to ours. ❤️