Contact Us
Northern Highlands Daily Voice serves Allendale, Ho-Ho-Kus, Midland Park, Saddle River, Upper Saddle River & Waldwick
Return to your home site

Menu

Northern Highlands Daily Voice serves Allendale, Ho-Ho-Kus, Midland Park, Saddle River, Upper Saddle River & Waldwick

Nearby Towns

Breaking News: Ex-Con Carjacker Who Was Run Over, Pinned By Newark Police Car Takes Plea In Federal Court
News

Community Rallies For Philly Area Boy With Childhood Alzheimer's

Connor Dobbyn with his brother and parents.
Connor Dobbyn with his brother and parents. Photo Credit: The Dobbyn Family (GoFundMe photo)

Support is surging for a 13-year-old Chester County boy who is fighting a rare, degenerative syndrome that has been compared to Alzheimer’s.

Connor Dobbyn was recently diagnosed with Sanfilippo syndrome Type C, a fatal brain disorder caused by a single missing enzyme.

"Because Connor lacks this single enzyme, toxic storage material is building up in his brain every second and damaging it," Marisa DiChiacchio, his mom, wrote on a GoFundMe.

There is currently no FDA-approved treatment or cure.

Connor will eventually lose the ability to walk, talk, and feed himself, DiChiacchio wrote.

"He'll develop movement disorders and seizures, suffer severe dementia, endure a lot of pain and suffering, and then he'll die. All in the coming years."

Over $896,000 in funds have been provided to the GoFundMe that would kickstart the first-ever gene therapy clinical trial for Connor's type of Sanfilippo syndrome.

Their goal is to raise $3 million to fund the trial, which in pre-clinical models shows that it can stop the disease.

There is no guarantee that Connor will be among the children accepted into the trial, but his parents believe this is their only hope. 

"We can't just sit back and accept that he's going to fade away and die, not when there is something that can save him," DiChiacchio wrote.

Click here to donate to "Save Connor."

to sign up for Daily Voice's free daily emails and news alerts.

Welcome to

Northern Highlands Daily Voice!

Serves Allendale, Ho-Ho-Kus, Midland Park, Saddle River, Upper Saddle River & Waldwick

Hi! You've read our articles so we know you like our reporting. To keep reading please join our mailing list.

Get important news about your town as it happens.