Darien Family Hopes for Dravet Syndrome Cure

Every day I drop off my daughter, Julia, at her preschool and enjoy the smiling faces of the toddlers who greet me.  Until last week, I had no idea that one of her classmates, Miles Clark, and his identical twin brother, Jeremy, suffer from a rare form of epilepsy called Dravet Syndrome, which can be life-threatening.  I’d like to share with you how the Clark boys and their parents cope with Dravet Syndrome, and how we in the Darien community can help these precious boys in the fight of their lives.

Miles and Jeremy Clark are typical-looking 4 year-olds with spiky blond hair and quick smiles.  The boys’ mother, Lindsey Clark, describes her sons: “They're really normal little boys, highly active and so very happy!  Jeremy loves trains, music and all outdoor activities. He runs all over the place!  Miles loves music and all types of vehicles. His absolute favorite song is Wheels on the Bus.”

However, at age 2, after suffering numerous seizures, followed by extensive genetic testing, Miles and Jeremy were diagnosed with Dravet Syndrome.

As in the case of the Clark boys, approximately 90% of Dravet gene mutations are ‘de novo’, meaning that they are not inherited from a parent, but rather are new mutations in the child.[1] 

According to the Dravet Syndrome Foundation, Dravet Syndrome “is a rare and catastrophic form of intractable epilepsy that begins in infancy.”  It occurs in approximately 1 out of every 40,000 births.  Children with Dravet Syndrome do not outgrow the condition and it affects all aspects of their lives.  “The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining on the family members who care for these individuals,” the Foundation reports on its website.

According to Lindsey, she and her husband Cyrus are constantly on the lookout for potential seizures, which can occur if Miles and Jeremy become overheated.  “We never leave home without their nasal spray (medication to stop the seizures should they occur).

"Most precautions depend on the season....in winter it's all about fever and illness.  I'm constantly monitoring their temperature and on high alert if there is illness at home or in school.   Also, I need to be sure not to overdress the boys or they'll overheat.   In the summer months we have their cooling vests ready to go and we water their heads down whenever we're outside in the heat.  We never let them out of our sight for a long period of time in case one has a seizure.  If we go anywhere, like the playground, we need to be watching them both closely, and of course there is the fear that a seizure will occur and cause injury to one or both of the boys.”

There are many fears that come with parenting a child with Dravet Syndrome.  Lindsey explains that she and Cyrus “worry that we might lose them, or that they will regress and lose any abilities they currently have [such as language] due to seizures or medications.”  As a result of its child study in partnership with the NYU Epilepsy Center, Dravet.org estimates that “a much higher percentage (16%) of children with Dravet syndrome die early (before 18) than in the general epilepsy population.”

Despite these fears, hope abounds that Miles and Jeremy will grow into mature young men, and that the medicines will improve and have fewer side effects.  Lastly, Lindsey and Cyrus hope for a cure, which is what the February 27th fundraiser is all about!

Join us February 27th from 6-10pm at the Backstreet Restaurant in Darien for beer, wine, appetizers and acoustic music to raise funds for a cure for Dravet Syndrome.  Proceeds from the fundraiser will go to purchase new cooling vests for Miles and Jeremy, which cool the blood near their hearts to prevent seizures, toward iPads for children with Dravet, and to the Dravet Syndrome Foundation.  

$50 cash at the door, or $20 cash and a check for $30 to the Dravet Syndrome Foundation.  Click here for a detailed flyer you can pass along to your friends!  

[1] http://www.dravetfoundation.org/dravet-syndrome/medical-information/gene...