Meg Foley was a major player in the creation of a girls’ volleyball program at Newburyport High, from its first season at the club level two years ago to varsity status this fall. The Clippers, in turn, dedicated their first varsity season to her three-year-old neighbor, Robbie Edwards.
Robbie lights up the room with her smile, and is happy to take any guest by the finger and provide a guided tour of her home. Her parents had no reason to believe she was anything but healthy when they took her home from the hospital.
Once Robbie turned a year old, it became clear she wasn’t hitting developmental milestones typical for children her age. Her parents were already worried something was wrong, and then she had a seizure. Genetic testing revealed a shocking diagnosis: hereditary spastic paraplegia type 47, or SPG-47, an extremely rare neurodegenerative disease only recognized in 2011 that causes severe developmental problems.
“My neighbor Robbie was the tenth person in the entire world to be diagnosed with SPG-47,” said Foley, a senior middle hitter on the volleyball team.
Robbie can say some words and walk without a walker, but her prognosis is devastating.
“It’s a progressive disease,” said her father, Chris. “If they develop the ability to walk, then they start to lose it.”
“There was one girl we read about,’’ her mother, Kasey, said through tears, “that managed to talk in short sentences, but lost the ability at 11.”
As patients age, said Chris Edwards, they’re “either paraplegic or quadriplegic, and severely intellectually impaired.”
The Edwardses faced every parent’s worst nightmare: a child suffering a debilitating disease so rare that hardly any research was being done to find a cure. They made it their mission to change that.
“Because the patient population is so small,’’said Chris Edwards, “it’s not only an issue of attracting research interest, but it has to be commercially viable. With these numbers, it’s not.”
They started a nonprofit called Cure SPG-47 to raise money for research themselves. Meg Foley signed on to run the Instagram account.
“They actually needed around $2 million to fund the amount of research that would be needed to hopefully find a cure,” said Foley. “I knew that I couldn’t raise two million dollars . . . but I could raise awareness.”
Foley asked if the Newburyport volleyball team could dedicate its first varsity season to Robbie, and everyone supported the idea immediately. Foley made a tri-fold poster board packed with information about SPG-47 and displayed it at home games. She got pink shirts for the team to wear on game days proclaiming, “We play for Robbie.”
Foley has always been an organizer. Without her, there would be no volleyball program in Newburyport. Tall, she’d always enjoyed playing the game in gym class, so freshman year she asked the school’s athletic director if she could form a team. She got shot down, but asked again when Kyle Hodsdon took over as AD her sophomore year.
He told her he’d push for the team if she got the girls together. She started a Facebook group, and was shocked when 40 girls wanted to play. They played a club season the following year. Lori Solazzo had recently given up her role as softball coach to spend time with her young children, but her first love, volleyball, pulled her right back into coaching.
She had her work cut out for her. None of these girls had ever played organized volleyball before.
“We knew the goal this year was not about winning,” said Solazzo. “It was about learning the game and trying to be as competitive as we could.”
“Make something out of nothing” became their motto.
Newburyport lost its first 15 games of the year, but the girls kept pushing forward with their heads up.
“Every time we played a team for the second time, all the coaches would always say how much they had improved,” said Solazzo. Each loss made her team scrappier.
The final game was Oct. 18 at Triton, and the girls found themselves in a familiar 0-2 hole. Solazzo huddled with her team.
According to Foley, she said, “This is your last game. Don’t even look at the scoreboard, just play how I know you can play.”
Newburyport won the next three sets to emerge triumphant.
“They rushed the court after, it was like they won the state tournament,” said Solazzo
The team had made somethimg for nothing after all, winning one for Robbie in the process.
“She is the busiest three-year-old in the world,” said Foley of her neighbor. “She has physical therapy, she goes to Boston Children’s all the time, she’s constantly busy with all the things she has to do because of the disorder.”
Foley wants to be a nurse for someone like Robbie one day.
Researchers at the University of Sheffield in England are working on a gene therapy project, while others at Boston Children’s Hospital are searching for a solution using stem cells. The Boston-based team is hopeful that a cure for SPG-47 might apply to some of the 50-plus variations of hereditary spastic paraplegia.
In the face of an unimaginable struggle, that hope keeps the Edwards family going.Tom Petrini can be reached at firstname.lastname@example.org.