Jeremy and Miles Clark, six-year-old Darien twin boys, experienced their first seizures at just six months old. After enduring countless additional seizures, many of which required urgent medical attention, the boys were finally diagnosed with a severe form of epilepsy called 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.
Today, Jeremy is a first-grader at Royle School and Miles is at Giant Steps in Southport to support his special needs. The Darien community is coming together to support the Clark family by raising money to help alleviate the exorbitant medical expenses incurred by the family as a result of Dravet Syndrome. 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 boys’ mother. “Both boys were happy, smiling, and meeting all of their developmental milestones. Our lives changed dramatically when the boys turned six 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, the 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.”
About The Benefit
This year's Benefit will take place at Jimmy’s Southside Tavern on Wednesday, November 5 from 6-9 p.m.
Additional donations, and/or for those whom cannot attend, may be made online
About The Clark Family
Lindsey and Cyrus Clark live in Darien with their six-year old twin boys, Jeremy and Miles. Initially, in the months following their birth, Jeremy and Miles met their developmental milestones and developed wonderful personalities. Each day brought lots of smiles and great memories. However, the Clarks’ lives changed drastically on October 1, 2008, when Jeremy was six months old. At the time, Cyrus was feeding the boys lunch when Jeremy’s arm started to shake. Soon after, his entire body was shaking. Cy immediately called 911, and Jeremy was rushed to the emergency room. It took doctors an hour to finally stop the seizure. Jeremy was admitted to the hospital for two days and after an EEG, CT scan, and Lumbar puncture he was sent home. Three hours after Jeremy returned home from the hospital, Miles had his first seizure and soon endured the same round of testing. Since the boys’ first seizures, they have had countless others, many requiring medical attention to abate. They have both had to be incubated and put into a medically induced coma to control their seizures. Finally, in the Fall of 2009, after genetic testing was completed, neurologists informed them that the boys had a severe form of epilepsy called Dravet Syndrome. In addition to Dravet, the boys have associated conditions, which need to be properly treated and managed. These conditions include:
- Behavioral and developmental delays
- Movement and balance issues
- Orthopedic conditions
- Delayed language and speech issues
- Growth and nutrition issues
- Sleeping difficulties
- Sensory integration disorders
- Disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)
To control their seizures, Jeremy takes 13 pills a day, and Miles takes 14. Many modifications have been made to their daily activities.
This past year, Miles was also diagnosed with Autism. After receiving the diagnosis, the Clarks decided that Miles and the entire family would benefit from a service dog. This dog would not only help alert the family and caretakers to oncoming seizures, but would also help keep both boys safe (i.e. crossing the street, wandering). The dog would give Miles more independence, as well as provide much deserved companionship. Current fundraising will help cover the family’s ongoing significant medical costs and will also help to obtain the service dog.
What is Dravet Syndrome?
Dravet Syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), 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. Individuals with Dravet Syndrome face a higher incidence of SUDEP (Sudden Unexplained Death in Epilepsy) and have associated conditions, which also need to be properly treated and managed.
Children with Dravet Syndrome do not outgrow this condition and it affects every aspect of their daily lives.
Unless a cure or better treatments for Dravet Syndrome and related epilepsies are found, individuals with these disorders face a diminished quality of life. Current treatment options are extremely limited and the prognosis for these children is poor. The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining for the family members who care for these individuals.
With the help of this benefit, as well as the ongoing efforts of community members, the organizers hope to make a significant difference in the daily lives of these boys.