Charlotte Keating is an inspirational 10 year girl who has a good life – surrounded by many, many people who love her. Charlotte loves to dance and sing. She loves swimming and hanging on the monkey bars at the park. In many ways, she is just like a typical 10 year old girl. But in many ways, she is not. Charlotte has Dravet Syndrome. For Charlotte, her first seizure started at 4 months old just before her mom picked her up from daycare after painting her bedroom in the new house that her family was about to move into. That seizure lasted around 45 minutes, but seemed like hours to her parents. After a general diagnosis of epilepsy, several doctors and several medications later, Charlotte was finally diagnosed with Dravet 4 years later.
The delay in diagnosis is attributed to the rarity of the disease; a factor which has also severely limited the availability of successful therapeutic strategies to treat these children. The clinical picture of the Dravet spectrum corresponds to disease severity and may range from mild seizures to continued seizures that last for hours. Charlotte experiences severe cognitive impairment as a result from her continued bought with seizures. While some of these therapies do provide benefit, we endeavor to find a therapy or suite of therapies that can be developed to specifically help Charlotte and other children who have Dravet syndrome.
Charlotte is a fighter. She has had hundreds of seizures – her worst lasting 7 hours. She has endured countless ER & ICU visits and all of the needle pokes required for blood work and IVs and other countless tests. She has regularly taken medication 2-3 times per day everyday of her life since she was 5 months old. She has tried various medications to find a level of seizure control that would provide her some quality of life – some of these medications made her too tired to get out of bed or made her not want to eat, but through trial and error over her life, we have become knowledgeable about Charlotte’s most effective cocktail (which currently consists of 3 medications).
Charlotte loves life. She loves making new friends, dancing on a stage, eating ice cream, going to the zoo to see the otters swim, and watching princess movies. With her unconquerable spirit, Charlotte has taught us to be strong, to live in the moment, and to keep our perspective on life’s truly important matters. We share these qualities with the mothers, fathers, siblings, other family and friends of the children who suffer from Dravet spectrum diseases. As a tribute to Charlotte, all of the children with Dravet syndrome worldwide, as well as their friends and families, we ask for your support in our effort to drive research that may yield new and superior treatments to combat Dravet Syndrome. Our mission is simple, help Charlotte and children like her make more new friends, dance on more stages, eat more ice cream, see the otters at the zoo another time, and to discover who Disney creates as their next new princess movie. Our ultimate goal is to be able to provide a cure, and your support can help future children by giving them an opportunity at a seizure free life. Let’s stop seizures at the beginning and help these wonderful children.