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Teenage medical marijuana advocate dies in her father's arms

Montville — Just last week, Susan Meehan was in Hartford telling legislators that she left Connecticut to give her daughter, Cyndimae, a better life.

But Cyndimae Meehan’s life ended Sunday as she napped in her father’s arms in Augusta, Maine. She was 13.   

The former Montville resident moved to Maine with her mother two years ago, as part of the family’s fight for access to medical cannabis.

Medical marijuana is not approved for pediatric use in Connecticut, but Cyndimae needed it to treat her Dravet syndrome, a rare form of epilepsy.

“She was a happy kid, she really was,” Susan Meehan said Tuesday. “In between seizures, she had a smile on her face.”

Cyndimae was diagnosed with Dravet syndrome as a baby.

After years of treating it with pharmaceutical drugs that left her unable to speak or walk, her parents discovered that medical marijuana could reduce her seizures, which were happening many times a day.

Laws in Connecticut prevented the Meehans from legally getting medical marijuana in the state and forced them into difficult choice: Susan would move with Cyndimae to Maine, where medical marijuana is legal for minors.

Her husband, Robert, and Meehan's four other daughters stayed in Connecticut.

Within months, Cyndimae was no longer taking pharmaceutical drugs.

Eventually she could walk, run, talk and play. She lived an almost normal life, even attending middle school in Augusta after Meehan testified in favor of a bill in the Maine legislature allowing accommodations for students who use medical marijuana.

On Sunday, Cyndimae woke up, played in the family’s Augusta home and had a small seizure — nothing out of the ordinary, Meehan said.

She asked her father to snuggle, as she often did after a seizure, and died in her sleep as she lay on his chest, before Robert Meehan realized she had stopped breathing.

"She just told Daddy she wanted to hold him," Meehan said.

Meehan said the years of pharmaceutical drugs and seizures — and an episode that put her in the hospital for a month in December — had been too much for her daughter.

"The toll that it took on her body was huge," she said.

But the last two years of Cyndimae's life were happy ones, Meehan said.

"We went bowling, we went swimming," she said. "We did all the things she loved, and we really had no idea that this was her goodbye."

Linda Lloyd, a Pawcatuck resident who testified in Hartford last week alongside the Meehans, said Cyndimae served as an inspiration to many families fighting for access for medical marijuana for their children.

Lloyd's son, Henry, has epilepsy. After his diagnosis she became active in groups that advocate for juvenile medical marijuana use and quickly struck up an online friendship with Susan Meehan.

"Her life is busy and crazy, but she answered me day and night," Lloyd said.

Watching Cyndimae improve after moving to Maine gave Lloyd hope, she said.

"It's devastating," she said, "Everyone was super hopeful, and she was kind of like a success story."

Lloyd and Meehan joined several other parents at the Connecticut General Assembly earlier this month to testify in favor of a bill that would support legalization of medical marijuana for children and other people with conditions that have not responded to traditional pharmaceuticals.

A similar bill that would expand the state's medical marijuana program to minors was introduced last year but did not advance beyond the committee. This year, lawmakers say its chances for its success appear stronger.

On Tuesday, the family drove from Maine back to Montville, with Cyndimae in a hearse behind them.

An online fundraiser started by friends in Maine had generated more than $10,000 to cover funeral expenses.

Friends and medical marijuana activists gathered in Maine and Massachusetts to wave purple balloons and signs as the family drove by.

In Montville, a small group of people gathered on the Moxley Road bridge over I-395 with dozens of balloons and signs that read "R.I.P. Cyndimae."

"She was a very, very strong movement here in Connecticut," said Cindy Day of New Milford.

Day, who represents the medical marijuana group Hemp CT, said Cyndimae's death could be a turning point for the fight to allow the drug for juvenile use.

"Her fight's not over," Day said.

Susan Meehan hugged and talked with supporters outside the Montville Funeral Home of Church & Allen, where the family arrived just before 4 p.m. Tuesday.

Services for Cyndimae are scheduled for Thursday at the funeral home, with calling hours from 9 to 11:30 a.m.

Meehan, who has become a recognizable member of the medical marijauna activist communities in both states, said she will probably stay involved in the effort to legalize medical marijuana for children in Connecticut.

"It's a horrible, difficult situation [whose solution] is as simple stroke of the pen," she said. "I have so many friends with so many children who are suffering. It will take some rebuilding time, but I will continue this fight."

m.shanahan@theday.com

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