By Cody Siwicki, Point Park News Service:
Not a day goes by for Heather Shuker that she doesn’t drive past a cemetery and think to herself, “should I make funeral arrangements today, ahead of time?”
She sometimes goes out to dinner alone, quietly listening to the conversations around her, often surprised at the topic of discussion at the table. Maybe somebody was late to work, or somebody hit a rough patch in their marriage. She does this by choice, for she feels too guilty to even eat in front of her daughter.
That is because Shuker’s daughter, Hannah Pallas, has uncontrollable seizures. Doing everything in her power, from switching career paths to taking on Pennsylvania’s political establishment, Shukar tries to not only better Hannah’s life, but the lives of countless of other Pennsylvania families going through similar cases.
“I mourn [Hannah’s] death every day, and she’s not even gone,” Shuker said.
Hannah turned 14 on April 5th, 2017. At the age of 14, she has had over 4,000 seizures in 2017 so far. Her condition has no official diagnosis, and doctors have determined she has had over 100,000 seizures.
Hannah’s seizures have been occurring since she was only four months old, when doctors believed it was only an eye tick. Her condition increasingly got worse, and she continued to suffer more and more seizures. In only the first three years of her life, she had faced absence, complex partial, and myoclonic seizures. Despite everything, she was not falling behind in other areas of development.
“She was developing normally; she reached all of her milestones. She was just talking a little slower than most kids,” Shuker said.
By the time Hannah was two, her mother had already become depressed, losing hope that her daughter would ever achieve small same goals that most parents take for granted. Hannah’s seizures got worse and Shukar knew in her heart that things wouldn’t be normal for her. But Shuker woke up one morning, and realized that if her daughter could be as sick as she was and still able to have a smile on her face every day, there was no reason why she couldn’t.
“This little girl is happy every single day; she runs away, she smiles, she’s just happy. She brings joy to every single person’s life that encounters her,” Shuker said. “I needed to be happy and I needed to take one day at a time and just celebrate each day that we have. So I did that.”
Shuker went to school for accounting, and eventually worked at a firm downtown. But as her daughter’s condition digressed, she needed less time consulting with clients, and more time giving Hannah the care she needed. Shuker made the decision to quit her job, and start her own business, allowing her the time to allocate being with Hannah at home.
Since she was about six years old, Hannah has mainly suffered tonic-clonic seizures. Johns Hopkins describes this type of seizure as “one of the most frightening seizures to observe.” Often lasting less than a minute, the tonic phase is when the person first loses consciousness, as the back muscles arch and the arms and legs convulse. The second phase, the clonic phase, is when the person continues to shake. The jerking will gradually slows in frequency and will eventually cease. Breathing should return to normal within a few minutes.
Hannah has nurses at her house every day except Sundays. On weekdays, she has nurses for 12 hours, and eight hours on Saturdays. Four times a month, a nurse stays at the house overnight to watch over Hannah. Shuker says she is grateful for her nurses, but having someone at the house every day doesn’t give her the alone time she wishes she had with Hannah.
That’s why Sunday’s are so special for her.
“I thoroughly enjoy my Sunday’s with Hannah because it’s typically me and Hannah and nobody kind of watching over what you do,” Shukar said. “But I don’t want to sound ungrateful because I love our nurses, it’s just different. Most people don’t have to deal with something like that.”
By October 2013, Hannah had run out of viable treatment options. Shuker decided to do her own research, in hopes of finding something that would help Hannah’s condition. She came across medical marijuana, something she had heard of but never researched. At Hannah’s next neurologist appointment, she brought it up to her doctor. The doctor turned around and left the room. Shuker knew she would need a new team if she was going to find treatment.
“They didn’t ask me to leave, but they weren’t going to help me pursue any other avenues like that,” she said.
That following month, Shuker watched a special on CNN, titled “Weed.” Featuring neurosurgeon Sanjay Gupta, the episode dealt with the case of Charlotte Figi, a young girl who was taken off seizure medication. Looking for any help she could, Figi’s mother had researched treatments and came across what would change her daughter’s life: Cannabidiol (CBD) oil. Following her first treatment, Figi only had one seizure that first week.
“It helped her immediately which was wonderful. So Charlotte is the face of CBD oils in the United States,” Shuker said.
Following the TV special, Shuker was contacted by a woman in Connellsville whose daughter suffers from Dravet’s Syndrome. Forming a coalition of mothers with children of similar diseases, they formed Campaign for Compassion, with their ultimate goal to legalize medical cannabis in Pennsylvania. The women built a mock waiting room in the rotunda of the Pennsylvania State Capitol in Harrisburg, handing out educational material to legislatures. For the first six months, someone was present at the waiting room every day the capitol was open.
The first legislator Shuker met with was State Senator Randy Vulakovich, a local politician, representing District 38 of Allegheny County. She asked if he would advocate for its legality. He told her that it’s a gateway drug and that he would absolutely not become an advocate. Shuker left him the same educational material that the group was passing out, and decided she had to come up with a new way to make a difference.
“All of the moms in the group campaign for compassion, all have something to add to the group, and we all have our little perks that we’re good at,” Shuker said.
So, she created a video of Hannah and what she goes through on a daily basis. Shuker sent it to legislatures, senators, and representatives around the capitol, and noticed that people were beginning to change their minds on the subject. She said the video hit close to home, especially to Vulakovich. For many, it was their first time realizing what they were advocating for. These were real people with real conditions, and that it was state’s right to let constituents have the most adequate treatment.
“Our children are sick, they’re suffering. And this little plant, that doesn’t have any side effects, can help them,” Shukar said. “It’s not right that we can’t try it but other people can.”
Some people may find it hard to criticize someone who would go to such lengths for their daughter’s right to a better life, but people thought she was a bad mother for not just moving to Colorado, where there is greater ease in acquiring cannabis than in Pennsylvania. Her support in Pittsburgh, which includes not only friends and family, but she feels the nurses who put hours into caring for Hannah, would be unmatched anywhere else.
“The only thing that Hannah enjoys in life is her family and her friends, that’s all the enjoyment that she gets. Why would I uproot her and take her away from that so then she has nothing?” Shuker said.
Following years of trial and error by the group, Governor Tom Wolf officially signed SB 3 into law, legalizing medical cannabis in Pennsylvania.
Shuker is grateful that Wolf was on-board with their agenda to legalize cannabis.
During her push for legalization, Hannah was only getting worse. In January 2014, Shukar was planning on attending a Senate hearing to plead for Hannah’s cannabis needs, but Hannah fell into “status” – where a person having a seizure cannot be calmed with normal seizure medication. She needed to go to the hospital. Hours later, she was on a life-flight helicopter to Hershey Medical Hospital. She had another seizure in the car ride home. The two had planned on flying out to Colorado to receive residency for cannabis; however, Hannah was diagnosed too sick to fly.
Shuker knew she needed to do everything she could for Hannah, even if that meant doing so illegally. She obtained cannabis oil, and Hannah did a 180 degree change. But with limited sources in a state where cannabis is illegal, you only have so many resources. She slowly digressed, and today, cannot walk on her own without someone helping her. Over the course of five months, Hannah lost ten pounds and the ability to eat on her own. She had a G-tube placed on November 3rd, 2014, and the following month, a doctor recommended hospice care for Hannah. Shuker never accepted that as an answer.
“I don’t think any parent would. I just keep trying to find something that will get her out of this,” she said.
On January 31st, 2017, Shuker started Hannah on a new oil. In January, she was facing anywhere between 30-60 seizures a day, but following her new treatment, Hannah was only facing 5-6 a day. When she is taken off the oil, Hannah ends up at the hospital. Shuker is doing everything she can to avoid any more ICU visits.
Hannah’s digressing health not only presents problems to her and her mother, but also the people surrounding them.
“Seizures affect everybody’s lives. They’ve affected my parents’ lives; my mom and dad are devastated to see that their grandchild suffers like she does every day. Her cousins; just to see Hannah suffer is awful,” Shuker said.
Shuker intends to write a book one day about her nightly thoughts and Hannah’s journey. She has learned life is short, and that you eventually learn to forgive and love people. So when she sits down at her favorite restaurant and hears two people gossiping about their daily problems, she can’t help but think of everything Hannah has fought through to be here today.
“I just think that Hannah is such an amazing little girl that she has taught me so much about life itself. About what’s important in life,” Shuker said. “If only they realized how little and really unimportant the things they complain about are.”
This piece is part of a project on Apocalyptic writing. It will be featured in a print magazine that will be presented at the 8th Annual Undergraduate Research Symposium on Friday, April 21, 2017 in the Center for Media Innovation on Point Park University’s campus.