Fight­ing to live

Cov­ing­ton fam­ily mourns loss of 6-year-old son, pushes for med­i­cal mar­i­juana to help daugh­ters

The Covington News - - FRONT PAGE - KAYLA ROBINS krobins@cov­news.com

When Ge­or­gia law­mak­ers killed the med­i­cal cannabis oil bill in the last hour of the March 20 leg­isla­tive ses­sion, Kelli and Mike Hop­kins hoped any of the dozens of seizures their six-year-old son, Abe, had a day would not be his last. That the bill would be passed in 2015’s ses­sion, giv­ing Abe a chance. Be­cause Kelli and Mike feel like they’ve tried ev­ery­thing. Now they’re left won­der­ing, what if? What if HB 885 had passed and Abe had been one of the few cho­sen to re­ceive the cannabis oil pill? Would he still be alive?

“There were times when he wasn’t seiz­ing,” Mike said, “and he had the po­ten­tial to show progress. If it could have re­duced his seizures by half, or even 25 per­cent, it could have done won­ders for him.”

Kelli and Mike re­cently trav­eled from Cov­ing­ton to a med­i­cal con­fer­ence in Chicago and talked with par­ents who were able to get their chil­dren into clin­i­cal tri­als of med­i­cal mar­i­juana. Some were trav­el­ing across states to get it. Mike said some chil­dren saw a 50 per­cent re­duc­tion in their seizures.

“Just stop­ping even one is worth it,” Mike said.

At six years old, Abe could barely move, seizures stunt­ing devel­op­ment from his first day. He never learned to talk.

“It was so sud­den”

Kelli and Mike had been try­ing to get Abe and his sis­ter Michala, 16, into Epid­i­olex tri­als, an oil pill low in tetrahy­dro­cannabi­nol (THC), the com­po­nent that makes you high, and high in cannabid­iol (CBD), the med­i­cal com­po­nent of the plant. But these tri­als are nar­row and re­stric­tive, hes­i­tant to ac­cept pa­tients with mul­ti­ple med­i­cal di­ag­noses. Michala lost a leg to can­cer when she was 14 months old, and the seizures she has been hav­ing since she was three weeks old make it too danger­ous for her to have a pros­thetic leg.

“It’s not like we’ve tried one drug,” Mike said.

Kelli said they took Michala to a trial at the Univer­sity of Alabama at Birm­ing­ham start­ing when she was a baby and would have to drive her there ev­ery other week­end. It was a lot, she said, to get her there and back, up­keep her in­for­ma­tion and chart ev­ery seizure.

The re­stric­tions are so tight, she said, there’s no way the tri­als, or even passed leg­is­la­ture, could lead to recre­ational use of this med­i­cal strain. “It’s so nar­row in scope,” Kelli said, “that even if it had been passed, they may not have been cho­sen.”

A neu­rol­o­gist they go to in At­lanta can only have 25 pa­tients for an Epid­i­olex trial, and Michala doesn’t fit the qual­i­fi­ca­tions. If HB 885, named Haleigh’s Hope Act af­ter a five-year-old girl with a seizure dis­or­der, passes dur­ing the next leg­isla­tive ses­sion, it will be at least a year un­til Michala could get the pill.

Some of their friends have moved to other states, where clin­i­cal tri­als of med­i­cal mar­i­juana have been ap­proved. At the time, the Hop­kins didn’t have the op­por­tu­nity to move be­cause of the fi­nan­cial and lo­gis­ti­cal chal­lenges they faced with mov­ing a fam­ily of six, in­clud­ing three chil­dren with spe­cial needs. Mar­lee Anne, 12, is the only child with­out a health con­di­tion.

Michala is con­sid­ered high func­tion­ing for some­one with Ai­cardi Syn­drome, a con­di­tion that causes her brain to de­velop with­out in­di­vid­ual left and right sides. They changed her med­i­ca­tion in March, but the drug left her un­able to sit up or eat on her own. When she be­gan to sit up again, they tried the med­i­ca­tion again. Again, the lethargy side ef­fect was too much for her to tol­er­ate, so they took her off.

Re­cently, while vis­it­ing fam­ily in Florida, she had to be given an emer­gency res­cue drug.

“I’m hav­ing a prob­lem with peo­ple say­ing they’re against it just be­cause it’s mar­i­juana,” Kelli said. “We’re al­ready giv­ing them some­thing that hurts.”

At times, the side ef­fects of the myr­iad drugs are worse than the med­i­ca­tion.

“It’s get­ting harder to man­age (Michala’s) seizures,” Mike said. “If we have to move to Colorado, we’ll do it. It’s to that point. It’s hard los­ing a child. It was so sud­den and un­ex­pected with Abe.”

“We would have (moved) if some­one had said it’s what will save him,” said Kelli, un­able to fight back tears but strong enough to know sit­ting silent will not help Michala or Mary El­iz­a­beth, 21 and un­able to sit up or talk. “It’s not that we wouldn’t have gone to the ends of the world for him. Now we just don’t want to lose Michala, too.

“It’s not a po­lit­i­cal game. It’s a child’s life. It’s a life that’s been lost, and we don’t want to lose another.”

“It’s hard watch­ing them”

HB 885 rolled passed ev­ery com­mit­tee and the state House and Se­nate, with more than 98 per­cent of the Gen­eral Assem­bly vot­ing in its fa­vor, but failed to pass in the mid­night hour be­cause of a bill State Sen. Re­nee Un­ter­man (R-Bu­ford) at­tached to it that did not pass in the House be­cause of the fear the autism bill would af­fect in­sur­ance rates and costs.

There’s an op­por­tu­nity now, Mike said. HB 885 would have been so nar­row and wa­tered down that, while it would have been bet­ter than the noth­ing they have now, law­mak­ers have the chance to write a bill that can help more peo­ple.

“They’re suf­fer­ing now,” Mike said. “It’s all about get­ting them a bet­ter qual­ity of life.”

Kelli said there is still work to be done be­fore the new leg­isla­tive ses­sion in Jan­uary. She urged peo­ple to read about the sub­ject and not to judge the bill on the word “mar­i­juana.”

“Say to your­self, ‘If I had this sit­u­a­tion with my child, what would I do?’” Kelli said. “It’s hard watch­ing them.

“We want our friends to come home who have had to move to other states to get their kids any­thing that might help. We want every­one to know this is our story. The op­por­tu­nity is com­ing up in Jan­uary. Write your rep­re­sen­ta­tives now. Don’t want un­til the ses­sion be­gins.”

“We’re not ex­pect­ing a mir­a­cle drug,” Mike said, “for Michala to sit up or for Mary El­iz­a­beth to start do­ing things. Even if it’s just stop­ping one or two a day.”

Sub­mit­ted photo /The Cov­ing­ton News

Abe, Mike, Mar­lee Anne (top mid­dle), Michala, Mary El­iz­a­beth and Kelli Hop­kins.

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