Valley Stream family finds hope in Liver Life walk

For 2-year-old Daniel Vecchione, dealing with liver and kidney disease is going to his way of life. But there’s no reason, his family says, that he won’t be able live just as long as anyone else.

Daniel’s family — father Danny, mother Stacey and sister Samantha — participated in the Liver Life Walk at Battery Park last month. Daniel’s Dream Team, a group of 50 family members and friends, participated in the 3.2-mile walk and raised $8,000 for the American Liver Foundation. That exceeded their goal of $5,000.

Liver complications have been an issue for Daniel since he was born. He suffers from congenital hepatic fibrosis and portal hypertension. Blood does not through correctly through his liver so it is like a clogged filter. The liver issues have caused Daniel to suffer from an enlarged spleen, leaving him with a large belly. “They said his spleen is bigger than mine right now,” Danny said, adding that it caused Daniel some balance issues that required physical and occupational therapy.

It took about a year-and-a-half of tests to finally diagnose Daniel with the liver diseases. The family has been bringing him to Columbia Children’s Hospital in Manhattan, and last September they traveled to the Cincinnati Children’s Hospital. The doctors there were still unable to come up with a diagnosis, and recommended an open biopsy which was performed last November.

Daniel’s liver was stabilized after three pieces were removed, and is operating close to normal. But in May, he began to have issues with his protein levels, and it was discovered he has progressive kidney disease. He has lost about 40 percent of kidney functions, and is on blood pressure medication to slow down his kidneys.

“He’s going to need a kidney transplant,” Danny Vecchione said. “But they’re not at the point where they’re testing for donors.”

Typically, he said, a transplant is needed once someone’s kidney functions are down to 10 percent. The family’s hope is that Daniel won’t need a transplant for several years. They noted that children usually reach the top of a donor list in about six months.