ACTON (WGME) — An Acton couple is turning to medical marijuana to treat their toddler’s seizures, and sharing their story in hopes of changing opinions, and ultimately, laws.
Addelyn Patrick sleeps as many as 19 hours a day. Instead of learning to walk and talk, her little world revolves around hospitals and drugs.
Love is what keeps her parents and big brother, Colin, 4, fighting to stop her seizures.Ken Patrick said Colin sneaks into Addy’s room to lie under her crib.
“Because I love Addelyn and I want to be next to her at night,” said Colin.
Meagan and Ken Patrick said Addy was diagnosed with Optic Nerve Hypoplasia at three-and-a-half months old. They said she’s legally blind, has hormonal dysfunction, and brain malformation. which causes severe epilepsy.
“It’s the worst kind of hell you can ever imagine, to see your child in pain, and there’s nothing you can do about it,” said Meagan Patrick. “Just nothing you can do to stop it.”
Addy has up to a dozen seizures a day, depending on how much medicine is in her system.
The Patricks have tried several different drugs. They said none of them stop the seizures, instead they diminish Addy’s quality of life.
In August, they started looking into alternative treatments. And now, the Patricks are actively pursuing medical marijuana for Addy.
“It sounds crazy and when Ken’s parents first suggested it I told them no way!” said Meaghan.
Addy is certified to use medical marijuana in Maine.
According to the Department of Health and Human Services, a patients doctor decides whether they would benefit based on the list of qualifying conditions. If the patient is a minor, they need the opinion of a second doctor, one selected by the state’s Division of Licensing and Regulatory Services.
Becky Dekeuster founded the Wellness Connection, which operates four of Maine’s eight medical marijuana dispensaries. She said kids typically take it in the form of an oil.
The Patricks, and other Mainers dealing with epilepsy, want a strain of medical marijuana that has few THC, and lots of CBD.
The THC is what gets you high. The CBD has been proven to help control seizures.
Five brothers in Colorado have developed a strain of medical marijuana called “Charlotte’s Web.” It’s named for five-year-old Charlotte Figi, whose family said her seizures were reduced by 90 % in just three months.
The Patricks are on a waiting list. When it’s Addy’s turn, they’ll go to Colorado. And if the medical marijuana works, they won’t be able to come home.
While it’s legal in Maine and Colorado, medical marijuana is illegal under federal law, so marijuana of any kind can’t cross state lines.
“For taking my child’s medicine, that’s so low in THC it couldn’t get a mouse high, I could be arrested and put in jail,” said Meagan Patrick.
For now, the Patricks wait.
“As soon as I get an email saying I have medication available for my daughter, I’ll be on the first plane out of here,” said Meagan Patrick.
A bill currently making its way through the statehouse would prohibit the part of marijuana that’s essential in making the oil used to control seizures.
It could affect the Patricks and other parents like them. They plan to hold a press conference on Tuesday, before a public hearing on the bill.