Rare Colorado pot strain could save Addy's life

Four-year-old Colin snuggles with his kid sister, Addy. (Courtesy photos)

ACTON, Maine - Meagan Patrick of Acton will soon board a plane bound for Colorado to buy some pot, but it’s not to get a Rocky Mountain high.

It’s to save her daughter’s life.

Fifteen-month-old Addelyn suffers from optic nerve hyploplasia, which hinders development of the body’s nervous system resulting in epileptic seizures that threaten her life each and every time they occur.

It was exactly a year ago that Addelyn, nicknamed Addy, was diagnosed with the condition, which led to her having seizures beginning in May.

Now she is being treated with three powerful anti-seizure drugs that have dangerous side effects like more vision loss as well as possible harm to her liver and kidneys.

Patrick, who grew up on Bigelow Road in Lebanon (her maiden name is Sinclair), told The Lebanon Voice on Friday that she and her husband, her daughter and 4-year-old son will be traveling to Durango, Colo., soon to continue a process that began last month, a process that will establish her residency in that state so she can procure a special strain of medical marijuana that has been touted as having miraculously curative powers in children suffering from such seizures.

Ken and Meagan Patrick with their children Addy, left, and 4-year-old Colin.

An hourlong video by CNN medical correspondent Dr. Sonjay Gupta details the seizure-fighting effectiveness of a strain of medical weed known as “Charlotte’s Web,” which is low in THC, the ingredient that makes people “stoned,” but high in pot’s other main ingredient, CBD, widely recognized as an anti-seizure substance.

In a study recently completed on the Charlotte’s Web marijuana, 85 percent of the children given the special pot saw their seizures reduced by more than 50 percent.  

No pharmaceutical has those types of results, Patrick said, especially with no side effects.

Addy, whose seizures are now controlled by pharmaceutical drugs like Sabril and Keppra, sleeps 18 hours a day due to their debilitating side effects.

So much sleep hurts Addy developmentally as well.

Any seizure threatens her life, so Patrick and her husband, Ken, had no choice but to continue with the powerful, yet potentially damaging, pharmaceutical drugs.

That was until they heard about Charlotte’s Web, a strain of pot developed by the renowned Stanley brothers of Colorado, a state far ahead on the clinical pot curve.

The Stanleys, who have made a living producing pot to get folks high, stumbled upon Charlotte’s Web, a strain of marijuana derived from intense hybridization, that has the low THC but the high CBD.

CBD is a relaxer, produces no high and has proved effective in reducing seizure frequency, in some subjects by 99 percent.

It is legal to smoke marijuana in Colorado, and legal to use Charlotte’s Web as a curative agent, even by children. Of course, doctors, including one contracted by the state, have to sign off on its use in juveniles.

But if you don’t live in Colorado you’re out of luck. The federal government still classifies marijuana as a Schedule I drug, with the likes of heroin and cocaine. The feds are in effect looking the other way with states that have legalized pot like Colorado and soon-to-follow Washington state, but if you take it across state lines, you risk prosecution and imprisonment.

That means the Patricks couldn’t even take it to Massachusetts General Hospital, where Addy is frequently treated for her condition.

At first Meagan Patrick was skeptical of marijuana’s curative powers, but in October Addy’s doctor at Mass General, Dr. Elizabeth Anne Thiele, gave the Patricks her blessing, saying, “If Addelyn was my daughter, we'd be trying it. It's wicked safe.”

And so Meagan Patrick is taking steps to assume legal residency in Durango, Colo., where she’ll have to negotiate a myriad of bureaucratic hoops to get her daughter the Charlotte’s Web cannabis, which is applied in a tincture form, most often under the tongue.

Once Addy is seen by a Colorado physician and passes muster with a state-appointed doctor to receive the treatment, the pot plants that will produce her tincture will be grown just for her.

The parents of some 300 children nationwide are seeking the same type of marijuana to help them, Meagan Patrick said, and Colorado is the only state that has it.

“In Colorado, the (marijuana) labs are way ahead of anywhere else,” she said, adding strict controls ensure its purity.

Meanwhile, while Maine has made huge strides in its medical marijuana usage and access, it will likely be years before pot researchers can isolate a strain like Charlotte’s Web, especially since no clippings of the curative pot strain can be legally shipped out of Colorado, she said.

Meagan Patrick estimates Addy’s marijuana will cost about $300 a month and, of course, will not be covered by any insurance.

Her husband, Ken, who works as a mechanic for the town of Somersworth, N.H., will take a week’s vacation time to travel out with them and help his wife and two children get settled as Addy is prepared to undergo treatments using the special weed.

Meaghan, who is on sabbatical as a third-grade teacher in Sanford, Maine, to care for Addy, will stay on in Colorado to see how the treatments go.

Right now, she said, they are not sure if they’ll move permanently to Colorado or not. They’re sort of taking things one day at a time.

“At first I would never have dreamed I’d be treating my daughter with marijuana, but the proof is there that it helps,” she said. “I’ll do anything in my power to help her.”

The Patricks will hold a fund-raiser and awareness Spaghetti Dinner this evening from 5-7 p.m. at the Somersworth Fellowship Hall at 49 Market St., in Somersworth.

If you would like more information on the dinner, call Kathy Patrick at 603-767-4978 or Nancy Garon at 207-339-9696.

For more info on Addy’s condition and progress visit her Facebook page at https://www.facebook.com/groups/622372994486936/

If you want to contribute to the cause visit http://www.gofundme.com/HopeForAddy.

To view the remarkable video by Dr. Sanjay Gupta go to http://youtu.be/Z3IMfIQ_K6U.