Canton native continues push to save his son

Connor Dobbyn shares a moment with his parents. (Photo courtesy of Taproot Photography)

This story originally appeared in the April 15 edition of the Citizen.

Canton High School alumnus Mike Dobbyn freely admits that he’s not a science guy. He’s good with math — he was on the high school math team — and is a financial advisor with Merrill Lynch. But he has learned a lot about human enzymes since his son Connor was diagnosed with a catastrophic disease in 2019.

Connor, a 12 year old with dimples and a wide smile to match his magnetic personality, has Sanfilippo syndrome Type C, a degenerative disease caused by a genetic defect and currently 100 percent fatal. In the simplest terms, human cells continually produce waste. Connor lacks an enzyme that normally functions as a trash removal system in the cells. Consequently, every cell in his body is clogged with toxins and is gradually losing function, an especially critical situation for brain cells. (Sanfilippo, known as “childhood Alzheimer’s,” also presents in types A, B, and D, each signifying the lack of a different enzyme.)

The scientific name for Connor’s Sanfilippo, Mucopolysaccharidosis (MPS) IIIC, rolls off Mike’s tongue effortlessly. He’s had plenty of practice talking about it since his post-diagnosis resolution to do what he can to save his son. He and his ex-wife, Marisa DiChiacchio, Connor’s mother, have both committed wholeheartedly to finding enough money to fund the first Sanfilippo Type C clinical trial to take place at University of Texas Southwestern Medical Center.

In a fundraising campaign video, Mike explains, “Connor is right in the scariest part of the whole disease. He’s okay right now but that could change any second.” The fact that scientists think they have found a cure that could save their son keeps Mike and Marisa going.

From their homes in Chester County, Pennsylvania, they continue their day jobs while devoting themselves to coordinating and executing a huge fundraising effort with the goal of collecting $1 million by the end of this June, Connor’s 13th birthday. If they succeed, initial bills for the trial can be paid, clearing the way for it to begin on schedule. (Costs of a clinical trial include drug production as well as the kinds of overhead expenses common to any endeavor, such as salaries, equipment, and utilities.)

First is a gearing up phase, with the actual clinical trial scheduled to begin by the end of 2022. Mike said there is no guarantee that Connor would be admitted, although from what they understand, he’s considered a “prime candidate.”

Mike noted that he and Marisa each has fundraising strengths the other lacks. Marisa, a corporate recruiter, is especially strong as a media liaison, while he’s more comfortable on camera. He described their younger son Keenan, luckily unaffected by the disease, as a “quiet hero.” Mike’s girlfriend, Jenna Riberio, an IT project manager, contributes planning expertise.

The team also draws on the energy and support of other family members, including Mike’s brothers, Ryan, in Virginia, and Chris, a New Jersey resident, and their parents, John and Linda, who operate Canton Tax Group.

Mike said old Canton friends and acquaintances have organized a variety of fundraising activities and wanted to especially thank Julie Beckham, Cynthia Maddestra, Jess Lowney-Sergi, Christine McDonough, Andrew Staiti, Brian Sexton, and Danny Erickson. Expressing his gratitude, Mike is inspired by their efforts. “Someday I feel obligated to give back to the community,” he said.

As of this writing, $515,525 has been raised. Assuming the million-dollar goal is met, more funds will need to be raised later on: the total price tag on the clinical trial is $5 million. Of that amount, Mike said he and his family will continue the effort to reach $3 million; other Type C Sanfilippo families will raise the remainder. “We feel like a family,” Mike said, describing the strong bond he has with Type C parents.

As Mike drives himself to spread the word and find funding through more networking and more events, his son’s illness is ever present. Mike said that in the last year and a half, Connor is “still hanging in there” but has lost some hearing and now wears hearing aids. His speech is harder to understand, and his legs are more bowed from the impact the disease has on the skeletal system. Initially diagnosed with autism, Connor continues to exhibit autistic behaviors actually caused by Sanfilippo.

These challenges would not disappear even if the clinical trial treatment is effective. Mike said the hope is that at least the medication could prevent further damage to Connor’s body and mind. In the meantime, Mike is buoyed up by the help he’s already received and how the campaign brings people together and offers the Canton community (and others) opportunities to try out leadership similar to the way he has experienced personal growth.

“We have a platform available,” he said, “and our cause invites people to get involved. It takes a village.”

To donate, go to www.gofundme.com/f/saveconnor. For more information, go to curesanfilippofoundation.org/saveconnor.

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Posted by Candace Paris on Apr 23 2021. Filed under Features. Both comments and pings are currently closed.