The parents of a boy with a rare, fatal brain disorder are raising money so he can participate in a gene therapy trial that has potential to stop the disease.
Marisa DiChiacchio and Mike Dobbyn’s 12-year-old son Connor has Sanfilippo Syndrome Type C, which is a rare degenerative brain disorder that is “like Alzheimer’s, but in children,” according to a GoFundMe campaign created earlier this month.
According to the campaign, the syndrome is “100 percent fatal” and has no cure.
“As the degeneration rapidly progresses, Connor will stop walking, stop talking, stop being able to feed himself,” the GoFundMe campaign says. “He’ll develop movement disorders and seizures, suffer severe dementia, endure a lot of pain and suffering, and then he’ll die.”
But Connor’s family is raising money for the Cure Sanfilippo Foundation and a gene therapy clinical trial that needs funding at UT Southwestern in Dallas, Texas.
gofundme Marisa DiChiacchio, Mike Dobbyn and their sons Keenan and Connor
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“Research for this gene therapy has shown in pre-clinical models that it can stop the disease,” the campaign says. “This clinical trial is the crucial step of determining whether earlier research is able to show the same therapeutic benefits in children.”
“It was like a bomb was dropped on us in the geneticist office,” Connor’s dad told CBS Philadelphia of the moment they learned of his diagnosis. “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 percent conviction on this diagnosis yet.’ “
gofundme Marisa DiChiacchio, Mike Dobbyn, Connor
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“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,” Connor’s mother added. “And just everybody comes out of the woodwork trying to help and wanting to help. So he’s like our local community rock star.”
As of Wednesday, the campaign had raised $172,210 of its $3,000,000 goal.