DARIEN, Conn. – Six years ago, a simple bath time routine for Darien’s Lindsey and Cyrus Clark and their two young sons changed their lives forever. The family is now hoping their community can help.
The Clarks’ 6-year-old twins, Jeremy and Miles, were diagnosed with Dravet syndrome in 2009.
Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy, is a rare and catastrophic form of intractable epilepsy that begins in infancy.
A benefit at Jimmy's Southside Tavern in Darien is scheduled for Wednesday, Nov. 5, from 6 to 9 p.m. to raise money to help alleviate the Clark family’s overwhelming medical expenses. Registration and information is available online .
For the first six months, Lindsey said there was no indication the boys had a debilitating medical condition.
“Everything was normal,’’ she said, although the boys were born eight weeks premature. “They were developing as if they were full-term babies and hitting their developmental milestones on time.”
The boys were given their six-month immunizations. One day later, after a bath, Jeremy had his first seizure and was rushed to the emergency room. Hospital tests did not reveal any abnormalities, and the Clarks were sent home after two days. A few hours after Jeremy returned home, Miles had his first seizure. “It turned into a nightmare,’’ Clark said.
Clark later learned children with Dravet syndrome frequently develop their first seizures after their immunization shots, but the real underlying cause is genetic. The boy’s seizures are often triggered by extreme temperature changes, excitability and fever.
The seizures continued for months, and the Clarks felt helpless. There were frequent hospital and emergency room trips, and both boys had to be intubated. Miles once had to be heli-vaced to Westchester Medical Center in Valhalla, N.Y.
Finally, in the fall of 2009 the boys were diagnosed with Dravet syndrome. Months of wondering gave the Clarks much-needed peace of mind. “Some people have gone 20 years without knowing,’’ Lindsey said. She did not know, however, the torturous road that was ahead.
“I was thrilled when we got the diagnosis, but was clueless,” she said. “I had no idea what Dravet syndrome was, and it’s truly the worst scenario on the seizure spectrum. They are on the mild end, but it’s so scary because they still have frequent seizures and every seizure is considered life-threatening.” According to the Epilepsy Foundation, one in every 40,000 children is born with Dravet syndrome, and it is much more common in boys.
The boys are on medication to stop seizures, but the effect is limited. Miles has daily seizures. Jeremy’s are less frequent, but more intense. Jeremy takes 13 pills a day, and Miles takes 14. They battle a range of issues, including behavioral and developmental delays, movement and balance issues, orthopedic conditions, delayed language and speech issues, growth and nutrition issues, and disruptions of the autonomic nervous system, which regulates body temperature and sweating.
Jeremy is a first-grader at Royle School, and Miles is at Giant Steps in Southport to support his special needs. In addition, Miles was recently diagnosed with autism, prompting the Clark family to look into a service dog, which would help to ensure Miles’ safety, as well as predict both boys’ frequent seizures.
Jeremy loves trains, while Miles enjoys music and television. They have support from their classmates and teachers. Lindsey’s brother and sister-in-law, Craig and Kristin Johnson of Wilton, and sister Tracy and her husband, Dave Armstrong, also of Wilton, have helped with daily challenges. Cyrus’ parents, who now live in Florida, have also been a tremendous family asset.
Dravet has made Lindsey more reflective, and appreciative. “I enjoy and cherish every day,’’ she said. “You don’t sweat the small stuff. It puts everything in perspective. Everything could be gone in a heartbeat. I’m thankful for each day that we have with them.”
But she also wants a cure. “We need something to change,’’ she said. “A cure is my dream.”
Readers who cannot attend on Nov. 5 can donate through the event website :
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