June 15, 2017
Taylor Sabky is a 30-year-old math teacher at one of Dorchester’s most vibrant and diverse high schools, Boston International Newcomers Academy (BINcA) on Maxwell Street. In recent months, though, she has been working on a problem that resists solution on a classroom blackboard, and it has enlisted her school community and scores of strangers in a campaign of compassion and hope.
Last October, her son Purnell was diagnosed with Niemann-Pick Type A, a genetic disorder so rare that it only affects 50 infants worldwide each year. Purnell is just over 13 months old, a marker of age that speaks to the urgency attached to his diagnosis: Complications associated with the disease – mental deterioration, loss of body movement, and widespread lung damage – typically begin between the 15- and 18- month mark, and most with this disorder don’t live beyond a third birthday.
Time is of the essence in Purnell’s case—and there is a chance, however improbable, that he can be saved. Taylor, 30, and her husband, Sam, 29, who live in Roslindale, have committed themselves to not only gaining a cure for their son, but also assisting other people who have children with the disease, and alert those who may not yet be parents.
“Purnell could start declining in two months,” Sam said in an interview with the Reporter. “It’s urgent. There’s no other word for it. If it doesn’t line up for him, it’s going to line up for someone else. But we want to save our son.” Their mission is simple, yet onerous: raise money to help find a cure.
Days after Purnell was diagnosed, his parents connected with Steven Laffoon, whose son, Wylder, died of Niemann-Pick Type A in July of 2012. Wylder, who had turned three in May of that year, has now become eponymous with the nonprofit that Steven founded in September of 2013, the Wylder Nation Foundation, an organization whose primary objective is financing medical research for the genetic disorder. Steven, though, said the organization’s main goal is to open channels of communication.
“There’s a huge gap between people trying to coordinate for these rare diseases,” he said. “You’d think it’d be common sense. But because the platform’s so small, the right people are usually not talking to each other.”
Taylor and Sam had already heard from the doctor who diagnosed Purnell about the possibility for gene therapy, but it was only when they talked with Laffoon that they realized that funding was a highly significant roadblock in the way of a cure. A lot of money was necessary, said Laffoon – anywhere from between $600,000 to $1,000,000.
A majority of the funds would go to building a clinical vector capable of delivering a healthy gene to Purnell’s brain, which would act like a virus by spreading and replacing unhealthy genes with new, vital ones. Think of a delivery truck that moves produce from its source to the grocery store. The rotten apples at the store are the unhealthy genes; the fresh produce, the healthy ones. A clinical vector is the truck that delivers the produce. And only one apple is needed, because it will multiply and take out the rotten ones.
For Taylor and Sam, there is cautious optimism. A GoFundMe page was built during this past Memorial Day weekend under the title “Save Purnell Today.” Networks of friends, family, and colleagues were contacted over the phone, through email, and social media platforms, Taylor explained, with no expectations for how things might go.
Over the next 18 days and into this week, “Save Purnell Today” has raised almost $400,000. The page has been visited by people close to the family, acquaintances long fallen out of touch, friends of friends, and folks whom Taylor refers to as “perfect strangers.”
Nothing, though, compares to the reception Taylor has received from the students at BiNCA. “My desk area,” she said, “is full of posters and inspirational messages that the students made in art class. It’s a shrine that just makes me smile when I come into school.”
BiNCA is a school of remarkable diversity: its students represent 24 countries and almost 40 languages. Many of them have written letters to their friends and family in their native tongues—Spanish, Cape Verdean Creole, Haitian, and Arabic, to name a few—describing Purnell’s situation and noting the money needed to make his continued living a possibility.
While many students would usually be outside enjoying the weather with their friends during this time of year, said Panion Tase, a native of Albania who teaches computer science at the school, the students are staying around school and working for Purnell’s cause. “It’s a collective thing,” he said. “I have been so impressed with the amount of interest we have from students.”
Student government leaders have coordinated a talent show for today (Thurs., June 15) to continue raising both awareness and money. They see Taylor in the hallway, stop to empty their pockets—sometimes only pulling up loose change—while saying, “Here, this is for your son.”
During the course of the phone interview with Taylor and Sam, Purnell was making plenty of noise as he woke up from his afternoon nap.“He likes to sing when he wakes up,” Sam says, laughing.
Purnell’s favorite band? The Eagles. Whenever Taylor or Sam had trouble putting Purnell to sleep in the past, the ’70s American rock band would be queued up and he’d drift right off. Now, when he wakes up, Purnell can be heard attempting to hum the band’s songs.
“He started cooing like that around six months,” Taylor said, laughing herself. “But, only within the last two months has he really found his pitch.”
To donate money to help save Parnell, visit the GoFundMe page at gofundme.com/SavePurnellToday.