While we hope and pray for only good outcomes, the brutal tragedy is that our children can pass away from Dravet. We are glad that they live on in our hearts and we are glad to remember the joy they gave to us during their short stay.

NYU Epilepsy Center Partners with Dravet.org on SUDEP in Dravet Syndrome Children Study

New York University (NYU) Epilepsy Center is partnering with Dravet.org on a new study to determine whether the sudden death of some children with Dravet syndrome is due to epilepsy or other causes. The study will collect information worldwide from parents of children with Dravet syndrome who have died suddenly.

Read the full details here.

Gérard Walmacq

Gérard Walmacq, father to Grégory, aged 29, and husband to Nathalie, passed away on Tuesday, July 12, from a heart attack. Gérard was a passionate advocate for Dravet families and active in many support groups, especially the Alliance de Syndrome de Dravet (formerly IDEA League France). He was a tireless campaigner for integrating children with Dravet syndrome into schools and society.

In 1981, Gérard and Nathalie set up a nonprofit for research and education for young people with epilepsy, which subsequently merged with other organizations to become Epilepsie France. Since then the Walmacqs have stayed in close touch with Charlotte Dravet, Catherine Chiron, and Rima Nabbout. Gérard led by example. He demonstrated his support of research by enrolling his son in the very first stiripentol trials, and Grégory is currently enrolled in a study being conducted by Dr. Nabbout.

Sue Goodliffe, a founding trustee of IDEA League France, writes: "Gérard would always share anything that he could, to help families, with the greatest sensitivity, knowing that we now have most things much easier than their family ever did, all those years ago."

Katie Hunter

Katie Elizabeth Hunter was born May 20, 1991. In her nineteen years of life, Katie grew to enjoy many activities including: singing, dancing, participating in karaoke, horseback riding, playing cards, playing paintball, baking brownies and cookies, and watching movies. Katie graduated in 2010 from Emmaus High School, where she was a member of the school chorus and participated in Special Olympics. Her favorite foods were pancakes, macaroni and cheese, and popcorn. She loved to go anywhere with her family, but her favorite spot to visit was her uncle Jimmy’s beach house in Virginia. Katie’s father shares that she had “beautiful brown eyes, a smile that melted hearts and an infectious laughter. She was so incredibly brave and kind to everyone. Katie was both innocent and wise. While she had difficulty learning, she was a great teacher. We all learned so much more from her than she ever learned from us.”

Katie was being evaluated to determine if she was a candidate for a corpus callosotomy—a type of surgery that separates the two hemispheres of the brain—the week prior to her death. It was hoped that this procedure would improve her quality of life.Katie passed away due to SUDEP (sudden unexplained death in epilepsy) on October, 18, 2010. She is survived by her parents, Robert and Angela Hunter of Emmaus, PA; mother, Lisa Hunter of Lehighton, PA; brothers Scott, Jesse and Jordan; grandmother, Maryanne Balogach; and many loving aunts, uncles and cousins. Katie’s family loves her very much and misses her terribly.

Erica Crump

Erica Crump of Walton, Kentucky, was born Sep 26, 1979 to Dale and Linda Crump. Despite the severity of her epilepsy, she accomplished a great deal, attending Northern Kentucky University and later transferring to Gateway Community College, where she earned a degree as a pharmacy technician. She loved music and played the piano. She was a member of the women’s Republican Party and was active in Banklick Baptist Church.

Erica was blessed with a daughter, who, like herself, began having seizures in infancy. It was not until DNA testing for both Grace, and then herself, that Erica received an accurate diagnosis for the condition that had so impacted her life. Erica’s passion then became educating the community about Dravet syndrome. She organized two ‘Walking for a Cure’ events in her area, which included media coverage. She met with legislators and anyone who would listen. Erica passed away following a seizure on Dec 28, 2010. She is survived by her parents; brother, Dr. Brian Crump; and six-year-old daughter, Grace. Erica will always be remembered as a compassionate and loving mother. Her smile and kind heart will be greatly missed.

Reed Stricker

Reed Thomas Stricker was born April 21, 2008. He was born healthy at 8 lbs, and for his first six months was a perfectly normal and developing baby boy. At six months old, Reed had a generalized seizure following a routine vaccination. The initial ER diagnosis was a simple ―febrile‖ seizure that, while not uncommon, was the result of an elevated temperature. In the subsequent five months Reed had many more seizures, some up to 30 minutes and longer. All common tests such as spinal tap, CAT scan, and blood tests were negative. We were abruptly introduced to epilepsy and our lives were changed.
Reed went on several anti- epileptic drugs (AEDs) but continued to have complex seizures and status epilepticus. In late March of 2009, he was hospitalized at Denver Children‘s Hospital after a long seizure for several days of EEGs, monitoring, and tests. Eventually, he was diagnosed with Severe Myoclonic Epilepsy of Infancy (SMEI) or Dravet syndrome. Although Reed still carried on like a normal toddler, played happily, grew quickly, and met all pediatric milestones, he had a total of 20 major seizures, 16 ambulance rides, and thousands of brief absence seizures. But for 20 months he had many adventures in camping, swimming, running, climbing, sledding, cuddling, traveling, helping, and playing—all while not the slightest bit aware of his condition or seizures when they occurred.

Sadly, on New Year's Day, Reed died quietly in a normal afternoon nap after playing in the park with his brother, father, and grandpa. The official cause of death was Sudden Unexpected Death in Epilepsy (SUDEP). Reed’s father remembers that “We could not have asked for a more loving and expressive child, who just recently learned to hug on his own free will and initiative. As I carried him into his final afternoon nap, he deliberately turned to me and put both arms around me and squeezed. I‘ll cherish that and the memory of Reed for the rest of my life. We will miss him dearly.”