Cyndimae Meehan, 13, suffered from Dravet Syndrome and had near daily epileptic episodes, but said that traditional medications only made the problem worse.
There is currently no cure for the disease and the most effective method, her family said, was treatment with cannabis oil.
Cyndimae and her mom became “medical marijuana refugees” when they moved from Montville, Conn., to Maine in 2013, and said that they could not return because of rules prohibiting cannabis treatments for children.
NEW YORK TO RESEARCH CANNABIS FOR KIDS WITH SEVERE EPILEPSY
The rest of her family moved last year and her mom told the Hartford Courant that her daughter had been doing well before the sudden death.
Susan Meehan said the teen had a seizure on Sunday and asked her dad to hold her before she stopped breathing.
The death came after Cyndimae, who had seen positive developments and no longer needed a wheelchair, returned to Connecticut earlier this month to lobby the state legislature.
She and her mother spoke to the state’s public health committee to advocate for children being able use medical marijuana treatments.
The family had also become advocates in Maine, where they helped pass a bill allowing schools to include facilities for children who may need cannabis, according to the Portland Press Herald.
A funeral for Cyndimae will be held Thursday in Connecticut.
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