Riva’s Dravet Journey

Miss Riva, daughter to Allison Williams and Jordan Messer; granddaughter to Vince and Debra Messer of Bar Harbor and Brian and Vicky Williams, is a sweet, charismatic, wild, energetic and seriously lovable 11-month-old girl. Riva was recently diagnosed with Dravet Syndrome. Dravet syndrome is a rare, severe epilepsy syndrome that begins in early childhood, and it was previously known as severe myoclonic epilepsy of infancy. Dravet syndrome is characterized by prolonged, multiple seizures frequently brought on by increased body temperature. Riva’s seizures began around six months and have increased in complexity and longevity.

One in every 20,000 to 40,000 people has Dravet syndrome; according to the Epilepsy Foundation, Dravet syndrome is also known as epileptic and developmental encephalopathy because the seizures and abnormal brain activity are associated with developmental delays and cognitive impairment.

While this is not the diagnosis we hoped for or expected, we at least have answers and a direction moving forward. Riva’s neurologist has referred her to Dr. Orin Devinsky, a highly recommended and well-known pediatric neurologist in New York. Unfortunately, insurance is pushing back on covering the costs associated with this visit (upwards of $25,000). This fundraiser will assist with medical and travel expenses and other unexpected costs associated with Riva's journey.

Riva’s condition is so rare that nobody in our area is equipped to treat it. Therefore, this referral is not only imperative to establishing a plan moving forward; it’s what is recommended by her neurologist.

Any contribution is helpful and a step towards helping this sweet girl and her parents.