On her last day, Cyndimae Meehan did the things she loved.
She colored. She played. She took a nap in her father’s arms.
Cyndimae, whose fight for access to medical cannabis to treat a rare form of epilepsy brought her and her mother before lawmakers in Maine and Connecticut, died Sunday while sleeping on her father’s chest on the couch in their Augusta home. She was 13.
“She really spread love and joy and an unbelievable smile everywhere she went, whether it was the State House or a restaurant or riding roller coasters in Florida,” said her mother, Susan Meehan. “She was a unifying force wherever she went.”
Cyndimae had Dravet syndrome, a rare and severe form of epilepsy that begins in infancy. Her parents turned to medical marijuana after many years of trying without success to control Cyndimae’s frequent seizures – sometimes many within an hour – using FDA-approved drugs. Soon after starting the cannabis therapy, they decided it was the best course for their daughter even though their home state of Connecticut doesn’t allow pediatric medical marijuana use.
So Cyndimae became a medical marijuana refugee.
Cyndimae and Susan Meehan moved to Maine 2½ years ago to give Cyndimae consistent and legal access to medical cannabis. During their time in Maine, they became well-known advocates, frequently testifying at the State House on bills that affect the state’s longstanding medical marijuana program. Meehan often testified in both Augusta and Connecticut with Cyndimae by her side.
Last year, Meehan testified in favor of a bill – since passed into law – that allows Maine schools to provide accommodations for children who use medical marijuana. The driving force behind the bill was Cyndimae’s desire to go to school, something her illness had made impossible without access to medical marijuana.
“Cyndimae is probably the biggest advocate we ever brought to Augusta,” Brian Breton, a Meehan family friend and the lead advocate for Maine Children for Cannabis Therapy, said Monday. “She really opened eyes in Augusta.”
WHEN ALL ELSE FAILED, MARIJUANA
Cyndimae began having seizures at 10 months old. For years, her family tried FDA-approved pharmaceuticals to control her seizures, but they often left her in a wheelchair, unable to move on her own and largely unresponsive.
After Cyndimae had tried 23 different anti-epileptic drugs, her neurologist told her parents they were out of options and should try to get her to a state where they could legally try marijuana.
While still living in Connecticut, Susan Meehan found a medical cannabis oil that stopped her daughter’s seizures. She managed to get a 90-day supply, but on the 45th day the grower was arrested and his plants were destroyed by police. Two days after the oil ran out, Cyndimae was back in the hospital.
“Before we made the decision to move, we were losing her. She was always in a wheelchair and she couldn’t eat,” Meehan said.
Meehan moved Cyndimae to the Augusta area, leaving her husband, Robert, and four other daughters behind in Connecticut until last year, when the rest of the family moved to Maine.
While she was taking her cannabis oil, Cyndimae was able to regain her strength and stop using her wheelchair. The difference was remarkable, Breton said. “When I met Cyndimae three years ago, she was in a wheelchair, was unresponsive and had a blank stare on her face. She was a shell of a child,” he said. “Now she runs and laughs and colors and goes swimming. She’s an inspiration to all of us.”
Breton is leading a campaign to raise money for the Meehan family to bring Cyndimae home to Connecticut for her funeral. The youcaring.com Web page he launched Sunday evening generated more than $4,000 in donations in less than a day. Cyndimae’s supporters will celebrate her life in April during a fundraising event for Maine Children for Cannabis Therapy.
Samantha Brown of South Berwick, whose daughter also has Dravet syndrome, first met the Meehans three years ago as each family was embarking on what she calls their “cannabis journey.” She said Cyndimae was a fighter with a smile that captivated everyone around her.
“When I think of Cyndimae, I think of a warrior. She always had a smile on her face,” Brown said. “She’s taught so many people around the world about what she’s gone through and what she does for treatment. She was such a vocal part in this movement in Connecticut and in Maine.”
Cyndimae’s story was well-known in the halls of the State House, said Rep. Deborah Sanderson, R-Chelsea, who sponsored the bill to allow patients to take medical marijuana at school. She said Cyndimae’s story helped lawmakers understand the importance of the medical marijuana program for patients.
“Her story is incredibly compelling,” Sanderson said. “It’s not until you actually see the faces of the people who benefit from this, especially the children who have been on a roller coaster of pharmaceuticals, that you really feel the impact.”
SCHOOL DAYS AFTER LAW CHANGES
After the bill to allow medical marijuana in schools became law last year, Augusta immediately put in place rules that allowed Cyndimae to start attending middle school at Cony High School. Meehan said her daughter was so proud to attend school in Augusta starting last September.
“Being with her peers and being able to sit at a table with other kids to eat lunch meant everything to her,” Meehan said. “She loved to be with people.”
Meehan knows her daughter had a big impact in Augusta and beyond, and she plans to continue that fight. But for now, she’s focused on mourning the smiling girl who was treasured by her parents and siblings.
On Monday, Meehan talked about her daughter’s love of roller coasters – the faster the better – and the shock of losing her to Sudden Unexpected Death in Epilepsy. Thirteen years ago, the Meehans were told Cyndimae probably wouldn’t live past 2.
“She was a gift every day we had her,” she said.