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Benefit Planned In Darien To Help Twin Boys With Dravet Syndrome

A fundraiser to support Darien boys Jeremy (left) and Miles Clark will be held on Wednesday, Nov. 5, at Jimmy's Southside Tavern in Darien.
A fundraiser to support Darien boys Jeremy (left) and Miles Clark will be held on Wednesday, Nov. 5, at Jimmy's Southside Tavern in Darien. Photo Credit: Contributed

DARIEN, Conn. -- A benefit to support twin 6-year-old Darien boys who suffer from a severe form of epilepsy, Dravet syndrome, will be held Wednesday, Nov. 5, at Jimmy's Southside Tavern in Darien.

The benefit runs from 6 to 9 p.m. and will include beer, wine, food and music. The cost is $50 and registration is available online .

The event will raise money to defray medical costs for Jeremy and Miles Clark, who experienced their first seizures at just 6 months old.

After enduring countless additional seizures, many of which required urgent medical attention, the boys were diagnosed with Dravet syndrome in 2009. At best, this disease can cause severe limitations to normal childhood and, at worst, as for the twins, it is life-threatening on a daily basis.

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.

“The first six months of our sons’ lives were magical,” said Lindsey Clark, the twins' mother. “Both boys were happy, smiling, and meeting all of their developmental milestones. Our lives changed dramatically when the boys turned 6 months old.  In the years since their first seizures, I’ve seen my babies intubated countless times, put into medically induced comas, poked, prodded — you name it, my boys have experienced it.”

“It’s every parent’s worst nightmare. Imagine seeing your children suffer on a daily basis without any way of stopping it,” said Ciara Thurlow, a Darien mom who is leading the charge to raise money to support the Clark family and to raise awareness for Dravet syndrome.

“Putting myself in the place of Lindsey and Cyrus Clark drove me and a group of fellow parents to take action and support this family in their time of need.”

“Jeremy and Miles are such dear, sweet boys, who required constant support for their frequent seizures. It was amazing and fulfilling to watch their young classmates provide friendship and help their beloved ‘Jer’ and Miles in kindergarten last year,” said Michelle Pagliaro, Jeremy’s teacher at Royle last year.

“To witness such earnest and innocent love and caring for a friend at such a tender age is amazingly heartwarming. To be a part of a community in which the children automatically embrace and support their fellow students is very special.”

“The children of Darien who support Miles and Jeremy at school every day have clearly learned the gift of empathy and compassion from their parents, for whom we are so grateful to for their support,” said Cyrus Clark, the boys’ father. “We are speechless with gratitude.”

Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy, is a rare and catastrophic form of intractable epilepsy that begins in infancy. 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.

For more on the boys and the fundraiser, visit the Clark Family Benefit Bash website .

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