For many Americans, the days leading to the Fourth of July are uneventful. Maybe there's an extra trip to the grocery store or a bit of planning for a neighborhood gathering.
But in the Hawkins family, the week is filled with repeated warnings.
Every year, in early July, Jessica Hawkins cautions her young daughter Antania about the imminent "boom booms." For most, fireworks are enjoyable, but for Antania, they can trigger a series of intense seizures from which the child would require days to recover.
This year, however, 10-year-old Antania was expected to enjoy the holiday's quintessential activity, thanks to medicine she's not legally allowed to take, and to a combination of desperation and gall on the part of the tight-knit family who chooses to give it to her.
After trying about 20 FDA-approved drugs to prevent Antania's seizures, Hawkins and her mother, Nina Mitchell, took Antania and her brother, Lucciano, to Colorado in search of medical cannabis oil. In the past 18 months or so, anecdotal evidence has surfaced that the oil, extracted from a marijuana plant, can help children with crippling seizure disorders like Antania's. In Colorado, the medicine is legal. In Pennsylvania, at least for the time being, it is not.
Antania Hawkins experienced her first seizure at age six months. She was soon diagnosed with Dravet syndrome, a rare form of intractable epilepsy (seizures that can't be controlled by medication) that has slowed Antania's development, rendering her predominantly nonverbal and dependent upon a wheelchair. The condition is the result of a gene mutation that causes the child to experience hundreds of seizures each day.
"A splash of water, a dog barking, a doorbell, sunshine, pain — anything that could startle her," says Hawkins, enumerating Antania's seizure triggers.
Her seizures range in severity; some are indicated by the slight drop of her head and last several seconds. Others — grand mal seizures — cause Antania to fall to the floor, leaving her unresponsive for several minutes. "Her teeth are fake, because she's smashed her face so many times," Hawkins explains.
The South Hills family has vowed to exhaust any option that holds the slightest potential for relief. As a result, the Hawkins have traversed physical distances and experimental depths. Their resolve drove them to Miami Children's Brain Institute, and even to the realm of veterinary medicine, in order to explore the benefits of bromide, a sedative used to treat canine epilepsy.
Their efforts have largely left them disappointed. "[Antania's] been on over 19 FDA-approved different medications and she's allergic to nearly all of them. She's been on every diet possible. She's had every treatment you could possibly think of for epilepsy. They have failed," Hawkins explains. "We've looked above and beyond, under every rock that you could think of, for a possible solution."
This past fall, when the Hawkins' younger son began experiencing seizures, the family grew desperate.
"When Lucci started seizing in October," says Mitchell, "we were out of options." The family learned that Jessica's two-year-old son, Lucciano, also carries the gene mutation that causes his sister's intractable epilepsy.
That led the family to Colorado in December.
Prior to their trip, Hawkins and her mother had been in contact with Dr. Alan Shackelford, a medical-marijuana evaluation doctor in Denver. Under the care of the Harvard-trained physician, Antania obtained access to Remedy, a strain of cannabis in the form of an orally administered oil. She received six drops of Remedy under her tongue twice a day.
Remedy is high in cannabidiol (CBD), a chemical compound found in marijuana that is believed to have medical benefits, and is low in THC, the component responsible for cannabis' psychological effects.
Shackelford tells City Paper that "Dravet syndrome is characterized by an alteration in the way that sodium and potassium move across the cell membrane in nerve cells to convey information. CBD seems to correct [that alteration] to an extent."
Shackelford says identifying the most effective medication depends upon finding the proper strain of cannabis for each individual condition.
"The THC content depends on what it is in the original plant. It's not that you can easily adjust the THC or CBD content," he says.
After the trip, the family returned to their South Hills home with several week's worth of medication. They noticed changes in Antania almost immediately, and she improved with prolonged use of the oil.
"For the first time, she didn't have any seizures for four days. She got up out of her wheelchair and walked for the first time without falling," Hawkins explains. Despite having been unable to move her right side, "[Antania] lifted her arms up to hug me." Nina Mitchell gushes, "That was the greatest feeling."
Antania's prolific progression became evident in her schoolwork as well. "She went from 25 percent of completing her work at school to 85 percent," explains Hawkins.
While Antania experienced noticeable improvements when she began using the medication, Hawkins says she needs continued treatment.
"She's not healed, she's not perfect, but she's better," Hawkins says. "We don't have the access here to what we need to get her to as perfect as possible." Thus, finding the most effective medication will require tinkering with the oil's THC and CBD content and, of course, the liberty to do such experimenting.
They returned to Colorado in February to procure a larger supply of the cannabis oil.
The sustained usage of the medication has given Antania's family the opportunity to finally get to know her. Her family members cherish the simple insights they were unable to gain during the first decade of the child's life.
"She loves music. My dad plays music for her. She sings, ‘I'm happy,'" says Mitchell lovingly. And sure enough, when "The Cha-Cha Slide" fills the living room of Antania's great-grandparent's home, the young girl smiles wide and raises both of her arms to dance. Antania is predominantly nonverbal, but since this winter, she has been able to construct simple sentences expressing wants, likes and dislikes.
"I dressed her in tutus and sparkles and sequins," Mitchell explains, "but she tells us she likes Spider-Man and the color blue."
The joy the family shares in Antania's progress is offset by the legal risks.
Medical marijuana is illegal in Pennsylvania, and significant risk accompanies the family's decision to bring the medication across state lines and administer it to Antania.
Giving the child the medication could result in "a wide variety of felonies and misdemeanors," says Patrick Nightingale, a criminal defense attorney and executive director of Pittsburgh NORML, a local chapter of the National Organization for the Reform of Marijuana Laws. "Corruption of morals of minors or endangering welfare of children are potential charges she would face for using a Schedule 1 drug for medicinal purposes."
Additionally, Hawkins could face federal felony charges because "any transportation of controlled substances over state lines triggers federal jurisdiction," Nightingale explains.
While he doubts that local or federal law enforcement would specifically target the family, "Custody is not dependent on criminal charges or criminal activity," he says. Thus the combination of a Child Protective Services investigation and an unsympathetic judge could legally remove Antania and Lucciano from Hawkins' care.
Even a seemingly innocuous situation like a traffic stop could draw the attention of law enforcement.
"Those are some real risks you can't plan for or account for," Nightingale says. "The consequences would be the same as if there was an active investigation. There's a very real, genuine risk anyone considering medicinal cannabinoids in Pennsylvania faces because you need a reliable, steady supply to be administered on a regular routine basis."
The family faced a legal issue this year when Hawkins, who has been open regarding Antania's use of medical marijuana, faced truancy issues at her daughter's school.
For more than five years, Antania has participated in Pittsburgh Public Schools' Program for Students with Exceptionalities. Due to the severity of her daughter's seizure disorder, Hawkins makes daily assessments of Antania's health to determine whether she will attend school.
"If we wake her up out of a sleep, she has nonstop seizures. If she's up in the morning, she goes to school. Waking her up in the morning would put her into a status seizure that could last days," Hawkins explains. "There's no way I'm going to stress her body even more by sending her to school."
While the school system's policies remain strict, faculty members serving students with disabilities strive to make these policies work. "Parents can have up to three unexcused absences," explains David Lott, the school's principal. "Because we serve a clientele of medically fragile students, we work very closely with the parent. In most cases, the parent has given us permission to talk to doctors, and we will help the parent as much as possible and get those doctor excuses sent over to us."
"We've never had a problem, and this will be her sixth year in school," Hawkins says. "They're aware of [Antania] being sick, of us getting her to school when we get her to school. If she's sick, I'm not going to send her to school."
However, on April 29, Hawkins received a summons to appear before District Magistrate Jim Motznik for a truancy issue. The notice describes three unexcused absences that took place in September and October 2014, more than six months prior to the summons.
Shortly before the truancy summons was issued, Hawkins says Antania's social worker reported her to Child Protective Services and pushed for the truancy charge. She says Motznik quickly dismissed the charge and indicated he would do the same for his child if the situation called for it. Motznik told City Paper he could not talk about cases that he has presided over. The social worker was also approached by CP and was not given permission to speak about the case on the record.
If the oil helps the Hawkins children, and the legal risks are so high in Pennsylvania, why not just move to Colorado?
The question underestimates the level of care Antania requires, and the comprehensive family unit that has evolved to meet her needs.
"A day in the life of being a caretaker for her requires way more than two or three people. You can't leave her by herself," Hawkins says.
Mitchell, Antania's grandmother, lives with Hawkins and her children and stays home to care for them while Hawkins works full time. Mitchell's parents live several houses down the street and offer support, especially with Lucciano. Despite the number of helpers, Hawkins describes the balancing act as "almost impossible."
More than the simple relocation of a nuclear family, a move to Colorado would require uprooting a delicately arranged system of support.
These limitations force the family to face the risks while waiting for Pennsylvania law to catch up with other parts of the country.
In Pennsylvania, a medical-marijuana bill (Senate Bill 3) that would treat a broad range of medical conditions passed the Senate in May with overwhelming support. However, once it entered the state House, the bill was placed in the House health committee, where many feared it would languish without a fair hearing. In the past couple of weeks, however, the bill has gotten new life. The Senate bill was moved to the House rules committee, chaired by state Rep. Dave Reed (R-Indiana County), who is more receptive to the bill than are other Republicans in leadership.
And last week, the committee announced the creation of a commission to help ensure the passage of a medical-marijuana bill.
"SB 3 is the framework," explains Rep. Ed Gainey, one of the members of the special commission. The creation of the commission reflects the priority given to the issue and the committee's desire to pass an effective bill.
"I want us to push something that other states want to follow," Gainey says.
Republican state Sen. Mike Folmer, one of the original sponsors of the Senate bill, says he wants to pass a bill that's "going to be broad enough to help as many Pennsylvanians as possible." Folmer says medical-marijuana laws in states like New York and New Jersey have so many restrictions that they are "basically nonfunctional."
Gainey believes a functional law is imminent. "We have the votes right now to pass the bill," he says.
A new law can't come soon enough for Hawkins. She has done her part to gain support by talking about Antania's personal struggles publicly and on social media. "Every day we make videos, take pictures," Hawkins says. Her advocacy represents just one voice in a collective of families across the state who have stepped forward to fight for medical cannabis.
"Patients and advocates formed this kind of alliance," she says. "There are thousands of us."
And while there is strength in numbers, Hawkins has to stand alone when deciding whether to take the legal risks of giving her child the medicine she needs. But in the end, she says, it's really no choice at all: "It comes down to either going to jail or a funeral."