Around York County: Parents Rally for Medical Marijuana
April 7, 2014
Source: The York Dispatch
The blinds are always drawn at the Ferro house, a dimly lit suburban enclave where the family protects 12-year-old Michael from the light. The family doesn't do anything together unless it can be done inside their Springettsbury Township home, where the rules are tailored to the norm created by their youngest son's unusual illness.
Flash photography is not allowed; Michael is so sensitive to light, they have to cover his face to take him to the bus stop.
He can't go outside to play until after dark; the springs on the Ferro family trampoline start squeaking around the time the other kids are heading to bed.
Michael does love the bouncing, though, and one day he slipped through the patio doors off the kitchen to make a break for the backyard. He fell to the ground and started having a seizure after barely reaching the end of the deck.
Nobody knows what led Michael to develop Lennox-Gastaut Syndrome, a disorder that causes him to have multiple and different kinds of seizures.
No one else in the family has epilepsy. Dad Chris Ferro, 39, is an attorney. Mom Angela is 36 and long ago abandoned the idea of using her biology degree so she could stay at home and care for Michael.
Older brother Dominic is 14, and a Little League baseball player. He might graduate from college by the time his little brother can speak a full sentence of coherent words. If he ever can.
Michael's difference from his brother was evident at an early age. He was 6 months old when his first seizure was diagnosed, and there have been thousands since, sometimes hundreds of them a day.
They've tried 20 different medications, with life-threatening side effects ranging from organ damage to self-injury requiring he wear a helmet.
Michael is typically in constant motion and paces around the house exploring, but the side effects of one medical cocktail made the normally active boy sleep for 22 hours per day. Some caused behavioral problems; there are no knobs on the family stove, and the stainless steel refrigerator has so many dents, it almost looks like the manufacturer designed it that way.
Michael is not a candidate for brain surgery. The nerve stimulator he had surgically implanted never improved anything, so they let the batteries go dead.
He's on three medications right now; the pharmaceutical roulette is at least an attempt to control the seizures, though none have ever seemed to improve Michael's condition, Angela Ferro said.
There have been days when hope seemed as blocked from their lives as the light outside.
"We're not embarrassed about Michael, and we don't want people to feel sorry for us." Chris Ferro said. "We love both our sons. This guy is... He's unique and we love that about him. Michael doesn't care, and that's really liberating."
But they wish there were something they could do to stop the barrage on his brain and increase his quality of life, so that he might bounce in daylight or attend one of Dominic's baseball games.
And what previously seemed like an inevitable decline for Michael and the children of numerous other York County families changed last year, after news started to spread about a high-cannabidiol, low-THC strain of marijuana and an oil treatment that has drastically improved the prognosis of a Colorado girl, Charlotte Figi, who had previously suffered hundreds of seizures per week.
The Ferros and other Yorkers are now among the diverse and growing ranks of families pushing to legalize medical cannabis in Pennsylvania, where even the most conservative legislators are starting to look past the connotations of "marijuana" to support decriminalization legislation that's seen as a last hope for desperate families.
Jackson Salemme was a healthy 5-year-old boy, co-conspirator to his twin brother Parker and an above-average kid physically and mentally.
The North Codorus Township boy would practice an exercise, such as tossing and catching a ball, until he got it just right. He absolutely refused to eat eggs because someone had told him exactly where they came from.
On a Wednesday, he got a headache and said he didn't feel well. A virus, the pediatrician said. But on Sunday, he walked into his parents' bedroom, waking them in the early morning, having a grand mal seizure on the bedroom floor, shaking, turning blue and stopping breathing.
He was in intensive care for three months, seven weeks of which were in a medically induced coma to get the seizures to stop.
Jack emerged a different boy, and his family's life was changed. He can't speak now, and constant seizures have left him on the cognitive level of a 9- to 18-month-old.
He and Parker used to look at lot more alike, but what hasn't been stolen by the severe seizure disor-der has been tainted by pharmaceuticals. Jack's teeth aren't coming in properly. His gums are swollen. His growth has been stunted, but he has upper lip hair at 7 years old.
It's hard for Parker to even talk about, losing his closest friend. Mom Cara Salemme, 35, tells Parker he's a "seizure pro" because Jack's episodes don't scare him as much as they still scare their grandma. Parker smiles a little, but it's obvious he would rather not have to be a "seizure pro."
Jackson has convulsed for as long as a terrifying 15 minutes, and the seizures are spreading to and damaging different parts of his brain. His condition worsens by the day, and trips to the emergency room are getting closer together.
"Our worst fear is there will be one that they just can't stop," said Cara Salemme. "He could go into status (a constant seizure). Jackson has gone into cardiac arrest several times."
She said medical marijuana, oil derived from the plant and taken orally, might be their last hope to stem the brain damage, relieve the constant torment of seizures and restore the chance for him to learn to talk again.
But she and husband Chris Salemme, a land surveyor, are "conservative parents" who had reservations, she said.
"I was scared to go to my first (medical marijuana) rally because I thought it would be 'peace, love and touchy feely,"' she said.
Then one mother's child started having a seizure on the steps of the Capitol, and it was obvious there were high times for no one, she said.
"If any of these medications worked," she said, pointing to an oversize Tupperware container on the kitchen table, "We wouldn't be having this conversation. A gateway drug? Yeah, a gateway to life."
Jack has been on 12 medications in the two years since this started; he's on six right now.
One of his meds did nothing for the seizures, but it gave him a toxic liver; weaning him from the drug caused severe seizures, and he ended up in the hospital for the third time over the weekend.
At the time of publication, Jack was still in Hershey Medical Center's pediatric intensive care unit for seizures that wouldn't stop. He was given a feeding tube and is struggling to recover from the episode.
The stigma around the marijuana plant makes it politically untenable for some politicians, and the public is still misinformed or uninformed about the oil, said parent Matt Sharrer of Tyrone Township, Adams County.
He said the misconceptions drive an otherwise patient man to near-madness.
"Someone asked me, 'How are you going to get a child with developmental delays to smoke it?"' he said. "I just wanted to shake them."
The strain of medical marijuana being linked to managing childhood seizures is bred to be high-cannabidiol and low in THC, the chemical that makes people "high," which is opposite from street marijuana. It's processed into oil that is taken orally; it isn't smoked. There are no documented negative side effects.
So it's frustrating when people ask why, if pot could help, the parents don't just break the law to get some and give it to their children, Sharrer said.
"It's 2014," he said. "If pot could help my daughter to have some quality of life, I could make a phone call and have some here this afternoon."
But it wouldn't help, because it's not the effective strain, he said.
Sharrer, one of the managers of his family's agriculture business, counts his and his wife's politically conservative parents and their family's Pastor among his supporters for his mission to pursue medical marijuana for his 9-year-old daughter, Annie. The only medication they ever found to manage her seizures, left her a hospitalized 8-year-old with a severely inflamed pancreas.
People also ask why they don't just move to Colorado, where medical marijuana is legal. All of the families interviewed for this report said they have and will continue to pursue that if Pennsylvania doesn't soon legalize the treatment.
They all have contingency plans that involve a messy splitting of their families, with grandparents and in-laws among those willing to uproot their lives to facilitate the treatment. Sharrer and wife Angela Sharrer are on a waiting list to go to Colorado, where an organization treats children with medical marijuana. At least 1,000 other people are on the list.
"It's like Colorado is the only state that has food and everybody's flocking to it," he said. "But why shouldn't the citizens of PA have access?"
The activism is unusual for the Sharrers, self-proclaimed "private people" who are pretty far from their comfort zone. He still feels guilty about recording a video of Annie having a seizure in her room, eyes rolling and body trembling, he said.
"But if I have to smack that down in front of a person who's voting on it, I will."