In 2013, young Hannah Shuker’s seizures wouldn’t stop. Repeatedly, her eyes would flicker, her back would arch, and her body would dissolve into full-blown spasms that sometimes led to a loss of consciousness, stitches, hospitalizations and more.
Doctors have described seizures as the scariest thing a parent can witness in their child.
Diagnosed with epilepsy at the age of 5, Hannah had seizures that became more frequent and more intense as she reached adolescence, said her mom Heather, who resides with Hannah in the Pittsburgh area.
Their neurologist gave them two treatment options: 1) add more seizure medications, which could potentially cause irreversible liver damage or death, or 2) perform a corpus callosotomy, which surgically severs the fibrous bridge connecting the two hemispheres of the brain and may still not stop her seizures completely.
Heather chose option 3—“to take Hannah home and love her every day.”
And then came medical marijuana.
Medical cannabis was not even on their radar screen in 2013, Shuker said.
Then, Dr. Sanjay Gupta’s documentary “Weed” aired on CNN. Charlotte Figi, a little girl with Dravet Syndrome, the most severe form of epilepsy, was showcased and was having success taking medical cannabis.
Shuker wanted to try it, but had many questions. “It’s not legal, so how will we get it? How do we even begin?” she recalled asking herself.
She contemplated moving to Colorado, where recreational marijuana has been legalized, and where children like Hannah had access to the drug. But this would take her away from the only joy in Hannah’s life—her family and friends—and would leave no one in Pennsylvania to fight for other children like Hannah.
A Facebook friend helped guide her path. Her friend’s child also has Dravet Syndrome and reached out to Shuker to see if she wanted to join in advocating for the legalization of medical cannabis in Pennsylvania.
Shuker said, “No question about it … 100% yes.”
The “moms” joined forces, but not everyone was a convert. The majority of people opposed their mission, Shuker found, believing that cannabis was a gateway drug. But maternal love conquers all.
“This was a difficult hurdle to overcome; however, it was not impossible when you find the right allies in government, and you remain committed to accomplishing your goals no matter what,” Shuker said.
Their motto was, “When the world says, ‘Give up … hope whispers, try one more time.’”
She even contemplated giving Hannah marijuana illegally, but she feared that Child Protective Services would be called, and she would lose custody of Hannah.
In January, 2014, Hannah and Heather walked into the first Senate hearing to testify in support of a bill to give Hannah the right to try medical cannabis.
Their attempt to testify “turned into a nightmare,” Heather recalled.
They had to rush Hannah into a private room as she went into status, which is seizure activity that would not stop.
She was rushed to the hospital, followed by a lifeflight to another hospital.
The following week, they were scheduled to fly to Colorado to look into establishing residency, but Hannah was in no condition to fly. Her mom felt like she was dealt a crushing defeat.
“As I sat next to Hannah in yet another hospital stay, I knew what we needed to do. I needed to fight the fight right here in Pennsylvania, obtain what I needed for Hannah in hopes that it would help improve her quality of life,” Shuker said.
Sometime in February, 2014, Hannah was given her first dose of cannabis. Hannah seemed to immediately respond … or was this a coincidence? Heather wondered.
“I wanted to believe that it was helping. Hannah started running around again and began to thrive. This lasted for a few months, but then she began to decline again.”
Confused, they then started trying several different cannabis products.
Heather understandably struggled to be patient. “I wanted a miracle.”
Plus, she worried, “How could I convince people that medical cannabis should be legalized when I was not seeing the results we had anticipated?”
“I then realized that I was not convincing people that this was a miracle plant … I was educating them with facts that it is a safe alternative treatment option that should be offered as a first line of defense,” Heather said.
For Hannah, things got much worse before they got better.
Hannah lost her ability to walk on her own in early 2017, was seizing almost non-stop, receiving doses of emergency medications at least two to three times a week, could not sit up on her own and had not smiled or laughed in three years.
In her short lifetime, Hannah has had over 100,000 seizures, and her body and brain needed time to heal, her mom realized.
“We had to give medical cannabis the time it needed to mend Hannah’s brain,” Heather said.
Hannah ended up in respiratory failure in the ICU for 13 days.
“Thirteen days sitting next to Hannah seizing non-stop on life support was the lowest point in my life,” Hannah said, “and yet it was our turning point.”
Hannah rallied back.
It has taken time, but since that horrifying ICU stay, Hannah continued to thrive and regain skills that she had lost.
After 30 days, she started to walk with assistance.
Heather continued to treat Hannah with the same medical cannabis product and adjusted the dose slowly.
In July 2017, Hannah had 11 seizure-free days—a success that produced real rejoicing. On a day Heather will never forget– December 30, 2017 — Hannah smiled and laughed for the first time in three years! And the last dose of traditional emergency medication was July 16, 2017, more than 13 months ago.
“Hannah has had over a 95% reduction in her seizure activity, and medical cannabis plays an important role in that reality,” Heather acknowledged.
“Hannah has her quality of life back because of choices I made and because she is determined to thrive! Medical cannabis is an essential ingredient in our recipe for life.”
Heather recalls poet Robert Frost’s “road less traveled” poem. Because of the road they chose, it has made all the difference.