GLENMORE, Pa. (CBS) — A 13-year-old boy from Chester County is fighting a rare, neurodegenerative syndrome that some have linked to childhood Alzheimer’s. His family spoke with Eyewitness News about their fight against the disease and why they’re working so hard to raise funds.
It’s a heartfelt conversation only this family of four can comprehend.READ MORE: Realmuto, Segura Help Phillies Rally To 7-5 Win Vs. Nats
“We are just used to it and it comes natural listening to it, but there’s a lot more stuttering and halting and it just takes him a long time to kind of spit out the words and verbalize what he’s thinking,” Michael Dobbyn said.
Thirteen-year-old Connor Dobbyn has Sanfilippo syndrome, a fatal disease that is often compared to childhood Alzheimer’s. CBS3 first introduced you to Connor last year.
13 yo Connor Dobbyn has Sanfilippo syndrome, a rare fatal disorder that affects his brain. On @cbsphilly at 5, I’ll have more on the fundraiser his family hopes will save his life. pic.twitter.com/xfImn4d15S
— Jasmine Payoute (@jpayoute) June 22, 2021
His condition, unfortunately, is only getting worse with time.
“We have seen some declines though in his health,” Michael, Connor’s dad, said. “He’s now wearing hearing aids full time and his speech is certainly regressing. It’s just another reminder that it’s a ticking time bomb.”
To save Connor’s life, his Chester County family is working to get him into a clinical trial that costs millions. They’re taking their message to the sky.READ MORE: EXCLUSIVE: Casey Johnston's Parents Speaks Out After Missing Daughter's Body Found
“We flew an airplane yesterday. It left Wildwood, flew north to Brigantine,” Marisa Dobbyn, Connor’s mom, said. “It said, ‘Help save our son, save Connor.'”
And to social media all to reach a hefty goal.
“I think we’re going to reach that million goal,” Keenan Dobbyn, Connor’s brother, said. “I really hope.”
Thanks to friends and selfless strangers, that goal now stands at nearly $800,000 dollars with a July 1 deadline — a milestone that made Connor’s 13th birthday a little brighter.
“I say this all the time, I cannot thank the community that we live in and just abroad enough,” Marisa said.
But every birthday, while joyous, is a reminder that they’re living on borrowed time. People with Connor’s condition are expected to live until their late teens.
“I love my brother so much that him changing is just a bummer to hear and feel,” Keenan said.
If the family reaches their goal of $1 million, Connor should be able to go into Phase 1 of the clinical trial, which includes medication. The family says they need about 2,500 people to give $50.
You can donate by clicking here.MORE NEWS: New Jersey Requiring All Employees In 'Certain' Healthcare Facilities Get COVID-19 Vaccine Or Regular Testing By Early September
CBS3’s Jasmine Payoute reports.