Jackson Salemme, the 15-year-old epileptic who fought to legalize medical marijuana in Pennsylvania, has died from the condition he used cannabis to treat.
His mother, Cara, found the teen unresponsive in his room when she checked on him one morning last week at their North Codorus Township home. The cause, she said, was likely a seizure.
“We find peace knowing that Jackson stayed here with us for 10 years to teach us all kindness and compassion and how to be advocates for each other and for our children,” Cara said.
Jackson’s mother was a force during the push for legalizing medical marijuana in Pennsylvania — and now she’s sharing her son’s story again to continue awareness.
“He taught us, the world and our community a lot of things about love and kindness,” she said Friday, “and we’re so thankful for that.
“I think his body was just tired,” she added.
Jackson was a “mischievous” boy who loved people, attention and to play ball with his father, Cara said, adding that the teen kept them both on their toes as parents.
He lived a life marked by pain, she said, having endured thousands of seizures since July 2011, when the then 5-year-old experienced his first following a trip to the beach.
Jackson developed fever-induced refractory epilepsy syndrome, a catastrophic epileptic disorder that strikes previously healthy children and has unknown pathogenesis and few treatments. His parents don’t know exactly when Jackson developed the condition or what caused it.
“Our lives had just changed on a dime. We were going on this trajectory and life happens and we were knocked down,” his father, Chris Salemme, 41, said Friday.
The family’s world turned upside down as Jackson became non-verbal, suffered brain damage and experienced convulsive, uncontrollable seizures frequently, his mother said.
The plethora of medications he was on also weren’t working the way his parents wanted, they said. But Jackson faced it all with grace and good humor.
“He knew how to melt your heart with one smile or one look, and he did it all the time on purpose to get whatever he wanted,” Cara said. “He’d bat his eyelashes at you — just full of kindness and peace and joy. And there was nothing more that he’d like than to throw a ball with you.”
His parents believed medical marijuana was the answer to give their son a “normal life” that was comparable to his twin brother, Parker Salemme. Cara soon began advocating for medicinal marijuana and was a fervent ambassador of Campaign for Compassion — a group of mostly mothers lobbying for the legalization of medical cannabis in Pennsylvania.
Jackson, his mother and even his baby brother, Cooper Salemme, now 9, became a staple at rallies in the Capitol that supported the cause.
“We spent years putting our heart and soul into getting that bill passed,” Cara said. “All we were fighting for that whole time was just a chance to know. To look at one more option and to give anyone else that needed another option — that option as well.”
The Pennsylvania Medical Marijuana law, Act 16, was signed into law April 17, 2016, and the new program is being implemented by the state’s Department of Health.
Medical marijuana allowed Jackson to get off some of the other medications he was taking, but it didn’t control his seizures the way his parents had hoped, his family said.
However, the work was well worth it, his parents said. The couple are grateful and thankful to the first responders who tried to save Jackson that morning and to the community for their kindness through the years, they said.
“All of the time and effort that we and so many other people put into getting that bill passed was time well spent whether it helped Jackson in a miracle way — it wasn’t the miracle we were looking for — but it has helped so many,” Cara said. “That has been very fulfilling and rewarding for us to know that a lot of people have benefited from the work that so many people did.”
A viewing is scheduled from 6 p.m. to 8 p.m. Monday at Beck Funeral Home, 175 N Main St, Spring Grove. Funeral service will be at 11 a.m. Tuesday at Christ United Church of Christ, 32 Baltimore St., Township of Codorus.
— Dispatch reporter Harper Ho can be reached at HHo@yorkdispatch.com.
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