Canton native goes ‘all-in’ in quest to save his son

Mike Dobbyn with his son Connor (Photo courtesy of Mike Dobbyn)

As a member of a small community of families that he never intended and certainly never wanted to join, Mike Dobbyn has a story to tell that will break your heart into pieces.

It’s the story of his eldest son Connor, a “wonderful” and “beautiful” 11-year-old boy with a magnetic personality and a heart of gold. Diagnosed several years ago with autism, Connor, through genetic testing, was recently confirmed to have Sanfilippo Syndrome — a rare, progressive and incurable genetic disorder that primarily affects the brain and spinal cord and has been likened to a type of “childhood Alzheimer’s.”

As Dobbyn explained in a late August Facebook post announcing the diagnosis to family and friends, the disease will “soon take over [Connor’s] brain and his body and will result in his losing the ability to talk, walk and feed himself. There is no cure and no current way to slow the progression of this disease. Without a cure, we will likely lose him before the age of 20.”

It’s the kind of news, he said, that “no parent should ever hear or could ever be prepared for.” Yet Dobbyn, ever the pragmatist and a well-trained problem solver going back to his days on the CHS math team, does not want people’s tears or their pity. What he will take, however, is their time, their donations, their skills and expertise — anything and everything that could potentially help rewrite the ending for Connor and other Sanfilippo children before it’s too late.

The way Dobbyn sees it, he now has one mission — to defeat Sanfilippo — and he intends to “fight like hell” with whatever army he can muster in search of a cure. “One thing that I do know is that Connor is not going down without a fight,” he insisted. “And I simply refuse to accept that outcome as his predetermined fate without doing everything in my power to help him win this battle.”

Having initially learned of the diagnosis this past spring, Dobbyn first took the time to privately grieve the news before embarking on a quest to learn as much as he possibly could about Sanfilippo and the Sanfilippo community. He read up on all of the latest scientific literature, reached out and made connections with other families and advocacy leaders from across the country, and, together with his family, partnered with the Cure Sanfilippo Foundation on an “ambitious fundraising and advocacy campaign” aimed at launching human clinical trials for children with type C Sanfilippo (the type that Connor has).

In just six weeks since going public with the news about Connor and launching “Connor Beats Sanfilippo,” the campaign has already managed to raise approximately $70,000, drawing on the power of social media and the generosity of friends and loved ones in both the Canton area and in Chester County, Pennsylvania, where Dobbyn now resides.

Several more fundraisers will take place over the coming weeks, and it’s only just the tip of the iceberg as real breakthroughs are expected to cost in the millions of dollars.

Admittedly, Dobbyn said there were moments in the days after receiving the diagnosis where he questioned if he was up to the challenge that lay ahead.

“Will this journey make me or break me?” he recalled thinking. “What am I really made of as a human being? Do I have what it takes as a parent to one day walk through pure hell — while keeping my smile, sense of humor and hopeful spirit intact through it all? Why my kid? Why me?”

But as he delved further into the research and started reaching out to other families going through similar experiences, he gained new insights and began to feel energized, transformed even.

“I know that it just changed me,” he said. “My most basic job as a father is to do everything I can to keep my kids alive and healthy and happy, and I realized that if there’s anything I can do to be part of this fight and I have something to offer, then I need to make sure I do it because I consider it my moral responsibility to play my part.”

Mike Dobbyn with his sons Connor and Keenan and parents John and Linda

Besides having a newfound sense of hopefulness, Dobbyn said there has also been some relief in finally having some real answers. While he and his ex-wife, Connor’s mother Marisa, had accepted the initial autism diagnosis when Connor was in kindergarten, they couldn’t escape the nagging questions and doubts as Connor fell further behind developmentally and intellectually.

“It became clear that the gap with his peers wasn’t closing; it was widening,” said Dobbyn. “Eventually he was spending most of his time in the autism support classroom. It was just a very stressful kind of road because you don’t know what you’re doing wrong. With a lot of other kids you’d see improvements, but Connor seemed to be doing worse.”

A financial advisor with Merrill Lynch, Dobbyn eventually got to talking with a client of his whose son had also been diagnosed with autism. The client had taken his son for genetic testing only to discover that his symptoms were actually the result of a rare genetic disorder.

Dobbyn, encouraged by his girlfriend Jenna, decided to pursue the same testing for Connor, and after going in for bloodwork and DNA sampling in March 2019, they were notified weeks later of the life-changing diagnosis: Sanfilippo Syndrome, type IIIC (one of four types with type A typically being the most severe).

Dobbyn said the news at first confused and then devastated both he and Marisa, who were both found to be carriers of the mutated gene that causes Sanfilippo.

“In many ways, the diagnosis almost felt too harsh and cruel to be real,” he said. “Why had I never even heard of Sanfilippo Syndrome? You’re actually telling us that a childhood form of Alzheimer’s exists? And that almost nobody has ever even heard of it? Processing and digesting this life-changing piece of news has taken time and tears and a lot of soul searching and self-discovery, a process that I anticipate will continue every single day going forward.”

Through conversations with Connor’s doctors and his own subsequent research, Dobbyn came to understand Sanfilippo as a genetic abnormality in which those afflicted are missing an enzyme which prevents their bodies from breaking down heparan sulfate, a natural cellular waste.

In explaining the disease to Connor’s younger brother, Keenan, who is 9 years old and unaffected by Sanfilippo, Dobbyn used the analogy of a vacuum cleaner to explain the function of the enzymes in question. Connor, he said, was missing the “C vacuum cleaner,” and therefore he is unable to remove the “junk” that builds up in his brain cells, causing his brain over time to get “cluttered” and making everyday tasks more challenging.

Dobbyn said they assured Keenan that no matter what happens in the future, they were going to be at Connor’s side “fighting for him as much as we possibly can.”

“He handled the news extremely well,” Dobbyn said. “But I also know that he will have a lot of questions as he begins to digest the information more fully and learn more on his own in the months and years ahead — the good, the bad, and the ugly about this horrendous genetic disorder.”

Connor and Keenan Dobbyn

Firmly in the “good” category as it pertains to Sanfilippo are the encouraging treatments that are on the horizon, including a new gene therapy treatment specifically for type C cases that is nearing the clinical trial stage. The therapy, developed at the University of Manchester in England and licensed by Phoenix Nest — a U.S. biotech firm founded by Sanfilippo parent and advocate Jill Wood — has shown promising results with a mouse model in replacing the defective gene with a healthy, correct copy. And with enough support and funding, researchers estimate that the treatment could be used to treat children with Sanfilippo type C within the next few years.

While it is far from a guarantee at this point, what Dobbyn can say for certain is that he, together with his family and friends, are going “all in” in the quest to find a cure. And for Dobbyn, that means tapping every resource and connection he can think of, from his Duke University alumni circle to his former CHS classmates and soccer teammates.

Just in the past two weeks alone, Dobbyn hosted a Sanfilippo Happy Hour at PJ Clarke’s bar in New York City and took part in a Super Saturday Fundraiser at Summit Fitness Club in Chester Springs. Today, a friend of his will be hosting a “Shine Bright for Connor” event at a Pennsylvania elementary school, and this weekend he will fly to Atlanta for a Sanfilippo tailgate fundraiser at the New England Revolution/Atlanta United MLS soccer game organized by longtime Canton friend Meri Scarcella Barbahlo and her husband, Daniel.

Dobbyn said he knew from the moment they went public with the news about Connor that people would step up to help. “I always believed that most people are good, and this journey so far has confirmed that in such a big way,” he said.

And while it can be hard to reach out and ask people for help, Dobbyn said the experience of sharing Connor’s story has made him stronger and more confident in his ability to be a “fierce and relentless advocate,” and he wants to make it clear to everyone that he’s only just getting started.

“I look at it like you light a little match and that match can grow into a bonfire, then a brushfire, and then a wildfire. And it could go up the ladder to the corporate level and then become something national,” he said.

“As I said, I am all-in with this fight. And I feel like I owe it to the Sanfilippo community to be the ultimate team player, and to use any resources and strengths that I have to push this story as far as we possibly can.”

For more information about Connor Beats Sanfilippo or to make a donation, go to www.ConnorBeatsSanfilippo.com. To learn more about Sanfilippo Syndrome and the efforts to find a cure, go to www.curesff.org.

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Posted by Jay Turner on Oct 4 2019. Filed under Features. Both comments and pings are currently closed.