Putnam Family Inspired to Find Cure for Rare Form of Epilepsy

Max was only 4 months old when he had his first seizure. It lasted 45 minutes and he had to be given medication at the emergency room to make it stop.

Seven years later, the Mahopac family is doing everything they can to find a cure for the rare form of epilepsy.

"We were not aware that anything was wrong with him before this," said his mother Gemma Meyerson. "Up until then he was a normal boy with no medical issues."

As they saw numerous doctors to get answers, Max developed other types of seizures that would last anywhere from a few seconds up to 15 minutes. When he was six months old, doctors recommended he gets a genetic test done to determine if he had Dravet Syndrome also know as Severe Myoclonic Epilepsy of Infancy (SMEI).  

Two months later, his family received a positive test result telling them he had a mutated gene that gave him this type of epilepsy.

Max, 7, takes a cocktail of different drugs to help fight the seizures.

He has one to two prolonged seizures per month, which last from 5 to 10 minutes. He will never 'grow out of it.' The gene that is affected controls the sodium channels in the body most notably in the brain and disrupts the way they function. Currently, the only way to treat it is with anti-seizure medications and sometimes specials diets, his mother said.

A few weeks ago he had one of his worst seizures. He was sick and had a high fever, which is a seizure trigger for him, and he ended up in what is called status epilepticus. Doctors believe the seizure, which kept slowing down and then starting over again, kept going on for four hours until doctors decided to put him in a medically induced coma to make it stop. 

"In general there is not enough being done with epilepsy research because of poor funding," Meyerson said. "In the past few years there has been more research being done with an increase in funding in new treatments and trying to get answers as to why this type of genetic mutation happens."

The nonprofit organization The Dravet Syndrome Foundation (DSF) was founded in 2009. According to the foundation's website, the goal of the organization is to fast track research to find better treatments and a cure for the rare disorder. 

"Developmental delays appear during the second year of life, although the severity varies among affected children," according to a press release from the Dravet Syndrome Foundation. "Dravet syndrome has no geographic or ethnic boundaries."

This year, DSF is hosting  on Saturday, March 31 in Greenwich, CT, to raise money and awareness. Miami Children's Hospital's Ion Channel Epilepsy Program will be honored at the benefit.

Roberta Berry, a Simsbury, CT, resident will receive the Spirit of Hope Award at the gala. Her 4-year-old granddaughter Talia has Dravet syndrome and Berry "has been dedicated to raising awareness and finding a cure," according to the statement, as well as organizing "numerous events" on her behalf.

Seizures associated with the disorder can be triggered by various factors, including but not limited to: fever, changes in body temperature unrelated to fever (getting into a cold pool, being outdoors in hot weather), over excitability, fatigue, illness without fever, flashing lights or even nothing at all.  

Meyerson said she and her husband Mike got involved with the Foundation to help raise the needed money for research. They hope through research, doctors will find better treatments and ultimately a cure for the disease.  

"We would want nothing else than to know the "real" Max not on medications and able to talk to us and tell us what he is feeling and what he wants," she said. "He has been robbed of a 'normal boy' life and when we see the glimmers of what he could be we want more."

Mike Meyerson, who owns his own video production company, provides video assistance on the Foundation's website and records the event every year. He does this for free as his contribution to the cause. Gemma said she helps out in any way she can – from getting people to donate items for the auction at the event, getting ads placed in the program, going to meetings to help plan the event, stuffing invitations and then helping at the actual event.

"With all that [Max] has gone through and will continue to go through, Max is an extremely loving and affectionate boy," his mother said. "He has taught us patience and what it means to be loved unconditionally. He is strong willed and has a great sense of humor. Everyone who meets him loves him and he has a way of leaving his mark on your life."

Gemma Meyerson's brother Tom Cuomo and mother Gemma Cuomo are the owners of in Yorktown. On April 27 and April 28, 10 percent of all sales will be donated to the Dravet Syndrome Foundation in honor of Max.

Learn more about the Dravet Syndrome Foundation and find out how you can help by visiting its website.

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