Marlee Anne Hopkins, 12, comforts her sister, Mary Elizabeth, at their home in Covington. Kelli and Mike Hopkins had three special-needs children who suffer from a seizure disorder that could be treated by a cannabis-based oil. Their 6-year-old son Abe passed away at the end of July when he had a seizure and stopped breathing. HYOSUB SHIN / HSHIN@AJC.COM

Medical marijuana: can family afford to wait?

The question hovers over Kelli Hopkins every day.

It rises with her each morning as she feeds her two remaining sick children their seizure medicine — five pills for Mary Elizabeth, seven for Michala. It follows as she packs them and their wheelchairs into the van for another hospital visit, another brain scan, another trip to the emergency room. It wakes her at 2 a.m. each night when she rolls over on the couch she’s slept on for years only to see carpet where there used to be a cot.

Should she stay and hope that Georgia legalizes the cannabis-based oil that could help her children, even though political bickering doomed such legislation in the spring? Should she go to Colorado, where the medical marijuana drug is available, though she and her children would have to move 1,400 miles away from her still-working husband?

Should she remain in the state where her young son, Abe, died in July from a seizure she says could have been prevented?

A shot of optimism

Hopkins calls Abe’s old chair the angel chair. Now it holds a picture of the smiling 6-year-old next to a sock monkey and the purple Lots-o-Huggin Bear from his favorite movie, “Toy Story 3.”

“Really, he loved anything Disney,” she said.

Three of Kelli and Mike Hopkins’ four children were born with severe seizure disorders.

The Covington couple’s two oldest daughters suffer multiple seizures daily. Abe’s condition was the worst — he had Gastaut syndrome and a suspected mitochondrial disease that caused 20 to 30 seizures every day.

Earlier this year, Kelli Hopkins, 47, heard of a cannabis oil that worked miracles in Colorado and was being considered for legalization by the Georgia Legislature.

Scientific studies on marijuana are scarce because its federal classification as a Schedule I drug makes it nearly impossible to test legally. One Colorado scientist claims to have before-and-after brain scans of more than 50 families who have used the cannabis oil, showing significant decreases in seizure activity. His scans are awaiting peer review before being officially published.

Nationally, families of seizure-ridden children have said the hemp-based product greatly reduces seizures, sometimes to as little as once or twice a month. More than 150,000 Georgia residents have epilepsy and other seizure disorders, according to the Epilepsy Foundation, and many have asked for the opportunity to test cannabis oil.

Hopkins isn’t worried about pot’s stigma. A low-THC, nonpsychoactive marijuana compound seems benign compared with the drugs she is already giving her children, with labels that warn of decreased bone density, nausea, stomach pains and possible death.

She joined other parents pushing for medical marijuana legislation known as House Bill 885. She urged everyone to write their representatives. Her voice resonated through passionate Facebook pleas.

After the Covington News ran a piece on her family’s struggle, Hopkins received more support — and a few detractors who lashed at her for having children after her first was born disabled.

Each of the children has a different array of disorders. Hopkins has been told there’s no hereditary link.

Hopkins’ children simply caught a bad draw.

Failed legislation

With three children in wheelchairs, Kelli and Mike Hopkins, 52, took their story to the hallways of the Capitol in March. They spoke to as many legislators as possible. One told them she thought Michala and Abe could get into a prospective cannabis oil study if the bill failed.

On the final night of the legislative session, the husband and wife watched nervously.

The bill had bipartisan support but also had its critics, among them the Georgia Christian Coalition, who said it would be at odds with federal law. Nonetheless, the state House approved its version of the bill.

The Senate sent back a revision, adding a mandatory requirement for insurance companies to cover autism that was a nonstarter in the House. At the 11th hour, the House provided a watered-down bill to at least protect families from prosecution for possessing the cannabis oil.

But the Senate never brought it to a final vote and the clock struck midnight.

“At the end of the day, I think people realize that combining two bills on such a powerful subject was not a smart thing to do,” said state Rep. Allen Peake of Macon, who authored HB 885. “I hope we’ve all learned our lesson.”

Kelli and Mike Hopkins cried together. After meeting so many families like their own, they wondered whose child would die while a solution was pushed back another year.

“It never crossed my mind that it would be ours,” Kelli Hopkins said.

False hope

Abe had his final seizure July 28.

The family had just driven back from a Chicago medical convention. Hopkins was hopeful. She had seen the children who were using the cannabis oil and were suddenly seizure-free. She wondered whether it would be available in Georgia this time next year.

As she unpacked, she saw that Abe’s lips had turned blue. She rushed to his car seat and saw he wasn’t breathing. Her husband told a family friend to call 911. Too late.

In the week after Abe died, hundreds of letters poured in. Each card promised God’s love, his strength, his comfort, his peace. With butterflies and flowers and sunsets, they offered their deepest sympathy, condolences and friendship. After the funeral, they lessened.

“My world stopped,” Hopkins said. “Everyone else’s has continued.”

We are here for anything you need, the letters read, but what her family needed was something no Hallmark sentiment could offer.

‘Let them all die’

Some Georgia medical marijuana advocates want a bill including prescriptions for patients with deadly conditions such as cancer and Lou Gehrig’s disease, or amyotrophic lateral sclerosis.

Katie Crosby, a Macon resident, suffers from chronic, debilitating pain. Prescribed medications such as Vicodin and Oxycontin have been ineffective and dangerously addictive. On Wednesday, she asked a state committee studying medical marijuana in Georgia to help her seek a safer, better treatment.

“I might look fine to you on the outside, but on the inside, my body is screaming in pain,” Crosby said. “Do you like going to football games, going out to eat, going to concerts? I do, too, but I can’t.”

A simmering tension erupted online earlier this month between those pushing for mass expansion of medical marijuana and the parents of disabled children, who want wide access but not if it will kill next spring’s bill.

“Medicine for all or medicine for NONE,” read a Sept. 3 Facebook comment from Ron Williams, the associate director of the Georgia Care Project, a medical marijuana advocacy group. “If you cannot try (to) save all the children’s lives, then let them all die.”

Out of time

A move to Colorado seems increasingly likely for Hopkins. She will have to rent a second home and leave behind her relatives, friends and church. Mike Hopkins will continue working in Georgia, flying to visit her and the kids on the weekends.

The cannabis oil might not be available even if she does move. Medical refugees from across the country are moving to Colorado to get the drug. A months-long wait list is forming.

Staying, however, offers even less hope.

Six months after HB 855 failed, there is no guarantee a similar bill will pass this spring. Michala still hasn’t been admitted into the cannabis oil trial study. It’s too late for Abe.

Hopkins can’t wait on Georgia much longer.

Cannabis oil

An extract of the marijuana plant, the oil is a cannabis-based product that can be manufactured with less than 3 percent THC, the psychoactive component of marijuana. It is orally ingested and does not get the patient high. While few studies exist on its medical benefits, many families have anecdotally said it decreases the frequency of seizures for their sick children.

State Rep. Allen Peake introduced House Bill 855 in the spring to legalize the prescription use of cannabis oil to treat children with seizure disorders. While the bill had bipartisan support, it failed on the Senate floor when time ran out in March’s legislative session.

Gov. Nathan Deal ordered five committee meetings to study medical marijuana’s potential to treat the estimated 150,000 families in Georgia with seizure disorders. The second of those meetings was held Wednesday in Macon.

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