Minutes before Heather Shuker of Pittsburgh was to testify before the state Senate about the need for medical marijuana in Pennsylvania, her testimony came in the form of her daughter’s full-blown seizure.
The glare of the lights, record below freezing weather, the roar of the crowds, the line to get through security—it was all too much stimulation for little Hannah.
An ambulance had to be called to the stately halls of the Capitol to rush Hannah, who was already on oxygen, to Harrisburg Hospital.
That January 2014 seizure was the shot heard ‘round the state.
Hannah has “severe and intractable epilepsy,” her mom explained. She was diagnosed with the most severe form of epilepsy, Dravet Syndrome, at the age of 5, but that dire diagnosis was later withdrawn when she was 10, Shuker explained, leaving a her with an unknown diagnosis and cause for her severe intractable epilepsy.
In a desperate effort to get help for Hannah, Shuker, a nursing home consultant, became one of the founding members of the original grassroots lobbying group known as the Campaign for Compassion.
“It affects every single aspect of your life. I was devastated when I realized she was having seizures.” Heather was forced to quit a job that demanded extensive travel because she had to remain close by Hannah.
Now 15 years old, Hannah has been on over 20 seizure medications and has had over 100,000 seizures. The family documents each one.
When the seizures first began, doctors told Heather that her daughter may possibly not live to be a teenager. And here she is, defying the odds.
At one time, Hannah attended the Watson Institute in Sewickley, but she had “way too many down days,” so they opted to offer her schooling in a home-based setting.
Shuker began doing her own research on her daughter’s illness years ago and saw that people out in the western part of the country were having success with medical marijuana.
She was disturbed that medical marijuana was not an option for Hannah at the time.
Like fellow advocate Christine Taylor Brann of Hershey, she saw a documentary by TV physician Dr. Sanjay Gupta, called “Weed,” in Aug. 2013, and it became her mission to try it for Hannah.
“After that aired, another friend of mine, Julie Michaels, reached out, and asked, ‘Do you want to help me fight to legalize medical marijuana in Pennsylvania?’”
That quickly, a star advocate was born.
Thanks to a Facebook support group, “We got moms all over the state and formed Campaign for Compassion.”
The lobbying began in earnest: they held press conferences, sponsored rallies, baked cookies, knocked on every legislator’s door with educational material, and created videos of their kids, both seizing and in happy times.
“We all contributed so many different things toward this cause,” Shuker said. “It was truly 100 percent grass roots.”
But the path to passage was wrought with speed bumps. The first state legislator Shuker met with said, “’Absolutely not. It’s a gateway drug.’ I was devastated.”
But she went back to that legislator again and again, armed with information and Hannah, and a “no” vote gradually became a “yes.”
Hannah’s neurologist is now on board with medical marijuana. We hope will one day more towards certification. “She has seen the change in Hannah.”
Shuker began giving Hannah medical cannabis in February 2014, a few days after that fateful seizure in the Senate.
After that 911 call in the Capitol and treatment at Harrisburg Hospital, Hannah went into “status” again—when seizures won’t stop—on the way home to Pittsburgh. Hannah was life-flighted from a turnpike rest stop to Penn State Hershey Medical Center. Just a week later, the family was planning to fly out to Colorado to look into establishing residency so they could get medical marijuana for her, but Hannah was too weak to fly.
Shuker was faced with a terrible decision: “Would I treat her here to save my daughter’s life, or slowly watch my daughter lose her quality of life? I chose to treat her,” Shuker recalled.
When Senate Bill 3, the medical marijuana bill, passed the Senate, “We were there,” Shuker recalled. “It was just a huge relief that we no longer had to think about whether we could treat our children legally or fear our children would be taken away from us for treating them with something that gave them a better quality of life.”
Shuker sees an improvement with each cannabis product she uses for Hannah. The problem can be summarized in one word: consistency.
“Because it was not legal, it was hard to find a consistent product, and I also didn’t have patience. I wanted to see something happen right away.”
She knows that with cannabis dosing, patience is a virtue. The dosing mantra is, “Start low and go slow,” they say.
Now, for the past year and a half, Shuker has been able to obtain a consistent product, after she applied for Safe Harbor, and dispensaries in Pennsylvania started to open.
Hannah lost her ability to swallow in 2014 so she has a feeding tube. Unable to ingest anything by mouth, she receives her cannabis oil through her G-tube.
She also receives THC intranasal spray as the first line of defense for emergency situations.
“It’s a fabulous product” with essentially no side effects, Shuker said.
“What’s really cool about Hannah—Hannah was such a happy girl. She loved the trampoline, she rode bikes. She was always laughing and always hugging people.”
When Hannah was first diagnosed, Shuker sunk into a deep depression. Then she realized –“Hannah is happy every single day, so I need to be happy with her.”
But four years ago, the happiness evaporated like oil over heat. The smiles left.
“It was pretty awful,” Shuker recalled.
In 2017, Hannah smiled for the first time in three years. Shuker remembers the day—Dec. 30, 2017.
The laughter and hugs came back.
Last year at this time, Hannah was in respiratory failure at Children’s Hospital in Pittsburgh.
She could not walk or sit up. She laid on the couch and seized all day, receiving emergency medication often at least three times a week that caused respiratory issues.
Things turned around for her several months after she was admitted to the ICU.
In Jan. 2017, Hannah started using a consistent supply of medical cannabis, combined with changes in diet and seizure medication.
“I’d much rather have medical cannabis as the first line of defense for these seizures,” Shuker said.
Hannah is now on four seizure medications, but doctors are trying to wean her off them. Some she may always be on, though they have severe side effects.
“I fear the seizure medications more than the medical cannabis, where it is a safe last treatment option?”
“Trying to take her off her seizure medications could potentially take her from me. That’s how scary these medications are.”
Shuker embraces the law’s clinical research component as “extremely important.”
Although the research may take time, she sees all the data collection and scientific proof she needs in Hannah. She loves the sound of Hannah’s laughter again.
“We celebrate every day we have with her.”