It hasn't been an easy road for the Candelario family of Milford.
Coleman Candalerio, 17, is battling Hypoplastic Left Heart Syndrome, a form of congenital heart disease in which the left ventricle does not develop. He was diagnosed with shortly after his born, and, as part of treatment, has undergone three open heart surgeries and other corrective procedures. The teen also has Protein Losing Enteropathy, a result of one of his surgeries.
Typical symptoms for children with Protein Losing Enteropathy include swelling in the hands and feet, but for Coleman the swelling has occurred primarily in the stomach and face, according to his mother, Kathy Vaughn Candelario. Making Coleman's case even rarer, he has not needed to receive a special human growth hormone most children with the condition require while going through puberty, Kathy said.
"There's a handful of children in the world with this disease," she said. "To our knowledge, Coleman is the oldest one. They don't really know what to do with him."
Because of the rarity of his condition, Coleman needs to visit with specialists in Pennsylvania, as doctors in Massachusetts have not been able to provide the proper treatment, Kathy said.
To help raise money for the treatment costs, a GoFundMe.com page has been set up. As of Friday, Feb. 21, the page had raised just over $9,000 towards its goal of $25,000.
"I appreciate every penny, absolutely every penny," said Kathy. "It's just unfortunate that it costs so much."
Dealing with the hassle of medical costs is nothing new for the family. Coleman actually capped out his medical insurance coverage before he was 6 months old, Kathy said, and because he must undergo treatment in Pennsylvania, MassHealth can't pay for medical expenses, so all costs are currently out of pocket.
"That's where the costs come in," she said. "Travel costs, food, lodging, and you have a copay and deductible. Every specialist comes in and sits and they all make a decision collectively together at the same time. Everyone is on the same page."
The family has also dealt with a fair share of additional headaches along the way. Recently, Kathy's bank account was hacked, she said, leaving her little to use for medical costs. Adding to that, the family recently discovered mold in their home that had built up over months after a remodeling project, and as such have had to pay for repairs and cleanup.
"It's just a speed bump," she said. "Everybody has something. In the scale of things, that won't even cover our trip there."
But the condition has not prevented him or his family from living a normal life. Recently, Coleman passed his driving test, obtaining his driver's license, Kathy announced on the GoFundMe page. Friends of the family are also working on a handful of upcoming fundraiser events to keep spirits and donations up.
"Coleman, he's just an amazing kid," Kathy said. "You would never know anything was wrong with him, looking at him. He's a really good kid, he's just a great soul. He's helpful and he's an old soul, he's just got this common sense and peace about him. I draw from him."