$1 Million goal set to help Staten Island boy with rare disorder
Anthony Capece looks like most 5-year-old boys; he loves legos, "SpongeBob SquarePants," and "Star Wars."
But unlike most kids, Anthony is fighting for his life.
He has a rare genetic disorder called MELAS, that so far has no cure.
"I want my son to live and have a lifespan longer than 15 years of age," said Antho's mother Danielle.
Doctors say Anthony has a genetic mutation that is so rare, they do not know of any other specific case.
"He actually has another gene that was unknown, and they're going to reach out to the international community to see if there's anybody else in the world that has his particular set of genetic combination," said Anthony's dad, Anthony Capece.
MELAS results in strokes, dementia, and a weakened immune system.
Anthony's parents say it costs an average of $350,000 a week for Anthony to get care at the Philadelphia Children's Hospital. They say insurance doesn't pick up the complete tab.
"It's difficult to find doctors who are covered by our insurance that are actually adept at dealing with his particularl set of issues," said Anthony's father.
The Capeces have applied for several grants and hold fundraisers to pay for the medical costs.
Their friends and family also stepped up, starting a GoFundMe Page with the goal of raising $1 million.
"We woudln't be able to do this on our own, the support is humbling," said Anthony’s dad.
Anthony is being fitted for a wheelchair in the next few weeks, and that means the Capeces need to make their home more accessible, starting with the stairs
"Our bathroom needs to be handicap-accessible now, so it needs to be ripped out," Danielle Capece said.
The Capeces hope they can eventually pay for full-time homecare, and that Anthony can get strong enough to go to school and fulfill his dream of going to Legoland in California.
"We're just grateful that he's here," Anthony's father said. "He is a miracle."
Anthony's parents are holding a fundraiser next week in Manhattan.
To find out more information, you can search Anthony's Journey at GoFundMe.Com