Imagine life before the pandemic being a race against death.
Then along comes this thing called the coronavirus. The economy shuts down, people start dying by the hundreds of thousands, and your own child’s Hail Mary effort to be spared from a rare, terminal disease collapses.
This is what the last eight months have been like for a boy you likely first met in this column in January, 12-year-old Connor Dobbyn of Chester County. He’d just begun, with help from Inquirer readers, hitting ambitious fund-raising targets to finance a cure for a disease colloquially known as “Childhood Alzheimer’s.”
But Connor’s push against a death sentence due to Sanfilippo syndrome Type C stalled soon after a followup Inquirer story in February about the pure affection and caring on display between this young boy and a handful of classmates who call themselves Connor’s Crew.
The West Vincent Elementary School, in Chester Springs, where we watched and photographed unmasked children doting on each other, was abruptly shut down weeks later in March as the coronavirus and its raging death rate sent Pennsylvanians into quarantine at home.
The emergency response to the pandemic also forced the postponement of a planned March 23 global fund-raising and publicity campaign that had been planned, using Connor front-and-center.
Lockdowns forced advocates to hit “pause” on those efforts even though their children continued to be attacked, with each passing day, by the voracious, debilitating condition.
“This disease does not stop,” said Glenn O’Neill, who founded the Cure Sanfilippo Foundation after his own daughter, Eliza, 10, was diagnosed with a less rare form than the one afflicting Connor. “It’s degenerative. It’s working on these kids every second, whether there’s a pandemic or not.”
Connor recently started sixth grade — but with a brain that has regressed to kindergarten levels of function.
Eight months after COVID-19 put fund-raising into limbo, the push for a cure is back on and hooked to the debut a few days ago of an online video about Connor at www.SaveConnor.com.
The new goal is to raise $3 million for a broad group of children in need of the only prospect for a Type C Sanfilippo cure. The money would finance as-yet-pending clinical trials for children hit with the one-in-a-million diagnosis.
The video was shot weeks before the pandemic struck and derailed desperate efforts by Connor’s family to raise money.
“It was a race against time before,” Connor’s mother and Lansdowne native Marisa DiChiacchio told me when we caught up this week by phone, “and then we had to take a backseat and say there’s something bigger going on. But my son has to wait because of this? That was a bit scary.”
When I first made Connor’s story public with columns in January and February, Inquirer readers responded with incredible warmth. They donated tens of thousands of dollars. Connor’s parents were amazed to see the momentum that sharing his story was having on pushing toward a daunting $1 million goal.
But with each passing day bringing these children closer to a debilitating adolescence and death (typically before adulthood), the new goal is to push for a more accurate number of what is needed to move things forward. The $3 million would finance the bulk of drug production and clinical trial costs for just under two dozen children like Connor.
“We’re putting all our marbles on this video campaign to go viral ... nationally and internationally,” O’Neill said. “We’re going for it all.”
“The hope," he said, “is that this can be the thing that is the cure or stops the disease.”
Advocates knew fund-raising would be hard, given how much is on people’s minds.
There is record unemployment, a toxic presidential campaign, children still mostly out of classrooms, and the ever-present fear of infection as a vaccine for COVID-19 remains in development.
But virtual events showed it could be done, even with so much on Americans’ minds.
The foundation raised $125,000 in a May fund-raiser for all types of Sanfilippo. And just a few weeks back, some of Connor’s so-called “crew” from elementary school helped raise $70,000 in a fund-raiser that involved them racking up and counting steps on pedometers.
Connor went back to school four days a week this fall, his mom said, and his classmates returned just a few days ago for the first time for what’s called two-day-a-week “hybrid” instruction in class. (His little brother, Keenan, was among the kids to return to blended learning this week.)
Marisa said her son came home from school Monday a changed person after seeing his friends in class for the first time since March.
“He seemed like a new kid again, just seeing his buddies,” she said.
Marisa and her ex-husband, Mike, grew emotional when they watched the video for the first time a few days ago. Hardest for mom were two moments. In one, Connor says “I love you” and kisses her. In the other, which she had never before seen or heard, the ever-grinning child smiles into the camera and says one thing:
“Save me, please.”