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Cole Cand was born with Hypoplastic Left Heart Syndrome, a defect which affects blood flow through the heart because the left side of the heart was not formed properly, according to a GoFundMe created to raise money for his treatment.
Doctors warned Cand's parents that he could only make it a few hours, or overnight, when he was young. Despite his early prognosis, he has lived to be 26 years old, although he has been in "inhumane" amounts of pain.
Cand has received three open-heart surgeries and has spent four years on the waiting list to receive a heart transplant.
One of Cand's doctor's informed him that some of his other patients were receiving a "groundbreaking and experimental" procedure at CHOP.
"He told us that this procedure is working, and kids who are going there with PLE and adolescents are going there with PLE and coming home without it," Cand's mom, Kathleen Vaughan Candelario wrote in the GoFundMe description. "They are coming home not needing to be listed for Heart Transplant anymore, not on fluid restrictions anymore, on much less medication, not in as much pain, and in remission."
The experimental surgery included specific stipulations, including that Cand must go to the hospital for five days of testing and "grueling medical exams" and procedures before the experimental treatment would begin.
Cand received the first of the surgeries, according to a GoFundMe update made on Sunday, Feb. 12.
"Honestly, it’s been quite awful, emotional and taxing," Candelario wrote. "He is doing good. They are hopeful it went well. He will need another surgery this coming week. It is easier and much shorter."
The family's insurance does not cover out-of-state medical procedures, creating tens of thousands of dollars of costs for procedures, travel, lodging, and food, necessitating the fundraiser.
"We are looking at tens of thousands of dollars for the procedures, travel, lodging, and food," Candelario said.
The GoFundMe has raised over $25,000 to support the family with costs related to the Pennsylvania-based surgery.
"Please consider donating to us to get Coleman to Pennsylvania for this procedure," said Candelario. "I want him to have an everyday life, and I want him to have a happy life. Moving forward, I want him to not be in pain anymore and to be able to go on to college and continue with his dreams."
Read more about Cand and see the GoFundMe fundraiser here.
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