PHILADELPHIA (CBS) — A Chester County boy is facing a battle with a terrible disease. Now, his family is raising money for a clinical trial that could save his life.
Connor, an adorable, lovable 12-year-old, is a pro on his scooter. His days are filled with sports and activities. He is a curious, energetic young man.
In the background of bustling life with his younger brother Keenan, mom, Marisa DiChiacchio, and dad, Michael Dobbyn, are in the fight of their lives to save Connor’s life.
“It was like a bomb was dropped on us in the geneticist office,” Dobbyn said. “I just remember it was a life-shortening condition, the geneticist actually told us at the time, ‘don’t Google this yet because we don’t have a 100% conviction on this diagnosis yet.'”
This Chester County family was blindsided last year when Connor was diagnosed with Sanfilippo syndrome, a rare disease affecting the brain and spinal cord. It’s compared to Alzheimer’s disease but in children, and it’s fatal.
Connor had been diagnosed with Autism several years earlier and Connor’s teachers suddenly noticed a change in him. This was a red flag that would change their lives.
The degeneration rapidly progresses with Sanfilippo syndrome. Connor will stop walking, stop talking and stop being able to feed himself.
“Develop movement disorders and eventually he’ll end up … he’ll die,” DiChiacchio said.
Dobbyn and DiChiacchio have endeavored to do whatever they can to save Connor’s life.
That includes launching a GoFundMe page that has a lofty goal of raising $3 million to fund a first-of-its-kind gene therapy clinical trial for Connor’s type of Sanfilippo syndrome.
“We knew Connor obviously was special and loved and adored by so many people, but sometimes you just don’t realize until something devastating like this comes out,” DiChiacchio said, “and just everybody comes out of the woodwork trying to help and wanting to help. So he’s like our local community rock star.”
In just four days, the family has already raised more than $160,000 on the long path to that $3 million mark.
This family has deep faith Connor will continue growing up, playing sports and riding scooters.
They’ve chosen to believe that, telling Eyewitness News, they will never stop fighting for their lovable little boy.
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