Bay community helps family battle Dravet Syndrome
Each baby born is a blessing—a tiny new life filled with hope and promise. So sweet and helpless, a parent attends day and night to his/her infant’s every need. Parents become accustomed to sleep being seasoned; parents, however, never become accustomed to being woken from a deep sleep by a child’s life threatening seizure.
In the blink of an eye, a parent must be fully alert and capable of making life or death medical decisions. For a parent of a child with Dravet Syndrome, these decisions must be made not just one but hundreds or thousands of times during their child’s life.
Always on guard, a parent must vigilantly monitor illness, internal and external temperature fluctuations in the air, bath tubs, lakes and swimming pools, as these simple things can bring on status seizures. Exercise, the excitement of a holiday celebration or birthday party, stress, changes in the weather, computer screens, televisions, video games, and certain lighting in schools, libraries, medical and office buildings can trigger seizures.
Even simple things like wallpaper, clothing, and flooring patterns can do the same. A simple drive with the sunlight streaming through the trees can set off seizures. Life with a Dravet Syndrome child becomes a fine line between playing it “oh so safe” or allowing the child to live by pushing the edge of the potential seizure triggers ever so slightly.
This is our life and has been since our youngest daughter, Jordan Grace Lyles, was six months old. Although she was pretty much a “textbook case” of Dravet Syndrome, it wasn’t until she was 10 ½ years old that we received the official genetic diagnosis. The specialists we met across the United States all concurred that Jordan was “too high functioning” for Dravet Syndrome; but my mother’s heart told me otherwise, and after comparing stories with another mother in Canada, I knew our daughter had Dravet Syndrome.
Dravet (pronounced dra-VAY) Syndrome is fairly rare and under-diagnosed. The prevalence of this disorder across the world suggests that nearly 334,000 people, or one baby born every other day, may have it. Due, in part, to the efforts of the International Dravet Syndrome Epilepsy Action (IDEA) League, more children with Dravet Syndrome are now being diagnosed at earlier ages.
Development of children with Dravet Syndrome normally progress until the age of two and then stagnates or regresses. Currently, there is no cure for Dravet Syndrome. Two promising medications used in treating Dravet Syndrome are awaiting FDA approval and are extremely costly. Children with Dravet Syndrome are at higher risk for death due to complications from seizures. Every aspect of family life is affected, as these children require vigilant supervision and care for life.
Jordan has been home schooled since birth. It was never a thought or a choice to put her in public school due to all the potential seizure triggers and heightened exposure to illness. Home schooling has served Jordan well, and she has several friends from our neighborhood and a great group of friends and support from our church family at Bay Presbyterian Church.
Our closest extended family lives nearly an hour away from Bay Village, and they each have their own families to take care of, so our friends in Bay Village and our church family have been our support network over the years. We are very thankful for all the care, rides, and listening ears offered to our older daughter, Lindsay, as she grew up, and for all the meals, help around the house, and emotional support we’ve been given as a family.
Living with Dravet Syndrome is not the life we would have chosen for ourselves, but it is the life God chose for us. As a result, we’ve made friends with families around the world who have children with Dravet Syndrome and have lots of friends in our area who have children with special needs. Even in the darkest times, we have felt blessed and have learned to appreciate what matters most in this life--the little things! Life is all about the choices we make; it’s a matter of attitude—in all things, choose joy!
Paula Lyles lives in Bay Village.
We Cordially Invite You to Join Our Cause!
'Twas the Night Before Christmas – A benefit for The IDEA League
The Fountain Bleau
635 Miller Road in Avon Lake
Friday, July 23, 5:30-11:30 p.m.
The evening begins with cocktails, hors d’oeuvres, and auctions followed by dinner, a fabulous Christmas dessert buffet, and the sounds of Christmas by Cleveland’s own Praise-Apella! Bay Village resident and 19 Action News meteorologist Jon Loufman will be auctioning some awesome items such as a custom designed garment by top Cleveland designer, Valerie Mayen; two beautifully framed Cavaliers jerseys signed by Shaq and “Z,” two Florida vacations and so much more!
Tickets are $100/adult and $25/child. Children are encouraged to attend and will even have their own craft/play area! Kids be sure to bring along your pajamas; after all, it is “Christmas Eve,” and one just never knows who may show up! To secure your place at “the event of the summer,” please contact Paula Lyles, Event Coordinator, at 440-331-3186 or firstname.lastname@example.org. Please hurry, tickets are going quickly, and you don’t want to be left out in the cold that evening – Jon Loufman is predicting snow! All donations are tax-deductible. The IDEA League is a 501(c)3 organization.