Wine & Dine for Dravet In Honor of Charlotte

NAVARRE, FL – MARCH 3, 2017 – The Dravet Syndrome Foundation is pleased to announce Wine & Dine for Dravet in Honor of Charlotte organized and hosted by Cheryl Chant and Ken Rudzki, Charlotte’s grandparents. It will be held on Friday, March 3rd, at Juana’s Club Pagodas/Sailors’ Grill in Navarre, FL. The event will feature live music by Stevie Hall (http://www.steviehallmusic.com/) and a wine tasting with featured dinner is available. The event runs from 6pm to 9pm and will also feature a silent auction and door prizes. All funds raised will benefit the Dravet Syndrome Foundation. For more details, please visit www.facebook.com/juanasnavarrebeach.
Charlotte was born a healthy baby girl a little over two weeks before her due date. She was immediately loved by her family, including her big sister Clara. She was the “easy” baby who slept through the night by 6 weeks of age. At almost 5 months old, she had her first seizure. It lasted 15 minutes and was stopped by medication given to her by the amazing first responders. She was admitted to the hospital, and we were told it was likely caused by fever and should not happen again. Two weeks later, she experienced another seizure – this time for thirty minutes followed by a second seizure lasting almost an hour in the ER. She required strong medications to stop the seizure and the use of a ventilator to breath for her. The seizures continued – sometimes as frequently as every day, and they did not get better despite multiple medications. By the time she was 8 months, she had been hospitalized multiple times and had been through multiple procedures with no answers. Genetic testing was done as no other reason for her seizures could be found. A month later, a diagnosis of Dravet syndrome was made. While we were devastated to have this diagnosis for our sweet girl, we were hopeful that things would get better now that it was known. With medication changes, her seizures are more controlled and happen about once a week (as long as she is not sick). She is a wonderful, very active almost three-year-old who loves Mickey Mouse and her big sister. We all try to take things one day at a time and cherish the time we have with her. Dravet is always looming in the background reminding us that things can change at the blink of an eye. However, we remain hopeful that a cure is found before that time. Thank you for taking the time to read Charlotte’s story. The family hopes that with more awareness more research will be done to help her and the many others with Dravet.
Dravet Syndrome Foundation, is a 501(3)c nonprofit organization based in Connecticut whose mission is to aggressively raise research funds for Dravet syndrome and related epilepsies, while providing support to affected individuals and families. Since its inception in 2009, DSF has awarded over $3.3M in research grant awards and over $120K in patient assistance grants. More details at www.dravetfoundation.org.
Dravet Syndrome is a rare and catastrophic form of intractable epilepsy that begins in infancy and for which there is currently no cure. It has an estimated incidence rate of 1:16,000-1:21,000. It is a debilitating, life-long condition that can severely impede the quality of life of the patient. Patients experience frequent seizures, poor seizure control, and developmental delays. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge. Development remains on track initially, with plateaus and a progressive decline typically beginning in the second year of life, although the severity varies among affected children. Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have other associated health issues, which also need to be properly treated and managed. Dravet syndrome has no geographic or ethnic boundaries.