Finding out that your child has a degenerative illness is the stuff of nightmares. For one family, that nightmare is a reality. Marisa DiChiacchio and Mike Dobbyn found out that their son Connor, who is 12 years old, has a rare and life-threatening condition. At first, he was diagnosed with autism. It was only recently that they found out Connor has Sanfilippo syndrome type C, a genetic degenerative brain disorder in children caused by a single missing enzyme.
"It’s the worst disease you’ve never heard of," Connor's family wrote on a GoFundMe page they started. "It’s like Alzheimer’s, but in children. It’s 100% fatal and there currently is no FDA-approved treatment or cure for these suffering children."
Imagining any child suffering through an illness like this seems unimaginable. But Connor's parents are determined to change his fate because there is a glimmer of hope that Connor could receive a lifesaving treatment. The only problem is that getting there costs $3 million — an amount of money that most of us couldn't even dream up.
The treatment is in the form of a clinical trial at the University of Texas Southwestern Medical Center in Dallas that still needs to be fully funded. Without that trial being funded and accepting Connor as a participant, his illness will progress, and that process will occur at a devastatingly rapid pace.
"Connor will stop walking, stop talking, stop being able to feed himself," the GoFundMe page reads. "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."
Connor's family is asking for donations. But they are also asking for people to share Connor's story. Because the more people who find out that there is a way to potentially save this little boy, the closer Connor, and other kids like him, get to having a fighting chance.
For more on Connor's story, visit the Save Connor GoFundMe page, and if you're able, make a donation that might help save his life.
