Community Corner
13-Year-Old Medical Marijuana Advocate Dies From Sudden Unexpected Death in Epilepsy
Cyndimae Meehan's family moved from Montville, Conn. to Maine so she could legally receive medical marijuana for Dravet Syndrome.
The world has lost a warrior.
Brian Breton shared that sentiment with the world after learning of Cyndimae Meehan’s passing from Sudden Unexpected Death in Epilepsy, or SUDEP.
Meehan passed away on Sunday, March 13. She and her family used to live in Montville, Conn., but moved to Maine in 2013 so she could continue treating her Dravet Syndrome with cannabis oil, the Hartford Courant reported. Breton is a friend of the Meehan family and an advocate for Maine Children for Cannabis Therapy.
“Sadly our world lost Cyndimae today,” the Maine Children for Cannabis Therapy posted on Facebook March 13. “She was our state's most powerful medical marijuana activist. This little girl made more impact than any of us adults. She'll be missed, but forever in our hearts.”
Breton published a statement from Susan Meehan, mother of Cyndimae, on a YouCaring fundraiser page created to help with funeral expenses. Susan wrote about how truly sudden Cyndimae’s passing was, adding that Cyndiemae colored and played that very day and was not having seizures at the time.
“She wasn't seizing, just sleeping on Daddy's chest in the light of day on her couch, her favorite place in the world,” Susan wrote.
About Dravet Syndrome
Dravet syndrome is a rare form of epilepsy that begins in infancy. Cyndiemae was 10-months-old when she first started having seizures. Dravet Syndrome is characterized by frequent seizures, poor seizure control and developmental delays.
Those with Dravet Syndrome have a higher incidence of SUDEP, the sudden and unexpected death of someone with epilepsy.
Advocating for Medical Marijuana
When Cyndiemae was living in Connecticut and taking medication approved by the FDA for seizure-control, she was wheelchair-bound. A neurologist reportedly suggested the family move to a state where medical marijuana was legal.
“Pre-cannabis, Cyndimae often had 1000's of seizures a day, most of them show as ‘slow-wave spikes’ on her eeg, and clinically she had 100s of ‘myoclonic jerks’ a day and many life-threatening generalized tonic clonic seizures (GTCs),” the family posted on a YouCaring page created in 2014, to assist with expenses.
When taking cannabis oil, family friend Breton told the Press Herald that Cyndiemae was quite active — running, coloring and swimming. She was finally able to attend school again.
Cyndimae and Susan both advocated for the use of medical marijuana. The two testified in support of a bill that would allow schools in Maine to provide schools with accommodations to support children who took medical marijuana.
Services for Cyndiemae Meehan
The services for Cyndimae Meehan will take place from 9 to 11:30 a.m. Thursday, March 17, at the Montville Funeral Home of Church & Allen, 53 Norwich New London Turnpike, Uncasville.
After calling hours, burial services will take place at Fort Shantok.
How to Help
Breton created a fundraising page on YouCaring to help the Meehan family with funeral expenses. As of 7:45 p.m. Tuesday, March 15, 141 donors pledged $10,455 out of a $10,000 goal.
Breton wrote on the page:
“For those who don't know me, I'm one of the people who helped Susan and Mae get settled in Maine. I live a street away from them. I just left Susan's house and she is doing as well as can be expected. She has lots of support out here. As a group we are a powerful force, and we'll continue to fight with her in our hearts.
As we know times like this are very tough, I can barely even type this. Many people have offered donations, so I set this up to keep everything easy. Maybe we can all help to keep the money side of this out of their minds as they process today's events.”
A fundraiser for the Meehan family will take place in Augusta, Maine on Tuesday, March 22. The event will run from 4 to 6 p.m. at the Red Barn, 455 Riverside Drive, Augusta, Maine.
"Our community is trying to cover the costs involved with sending her back to her home state of CT, and cover as much of the cost of the services a warrior like Cyndimae should have as we can," organizers wrote on the Facebook event page.
Click here to view the Meehan family fundraiser page on YouCaring.
(Photo: YouCaring fundraiser page)
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