CHARLOTTE, N.C. —

A 4-year-old boy with an extremely rare disease is waiting for the call that could save his life.

A Charlotte business is stepping forward to help a 4-year-old boy fighting a rare disease.

As Anthony LaPenna waits for a transplant to save his life, the community is coming together to support his family. At first glance, it looks like Anthony leads a life like any other young boy, but he has tackled a lot since he was born.

Anthony carries nutrients in a backpack. It’s one reality of living with a chronic disease that he was diagnosed with at just three weeks old.

“He was diagnosed with Intestinal Psuedo Obstruction. Basically his intestines just don’t work. They don’t have movement to move through air and water and food,” said Colleen LaPenna, Anthony’s mom.

“Intestinal pseudo-obstruction is a rare condition with symptoms like those caused by a bowel obstruction, or blockage. But when the intestines are examined, no blockage is found. Instead, the symptoms are due to nerve or muscle problems that affect the movement of food, fluid, and air through the intestines.”

-NIH

Anthony’s spent several long-term stays in the hospital and gone through several surgeries. Last month, doctors placed him on a waiting list to receive a small intestine and a liver transplant.

“A phone call could come tonight; it could come a year from now. It all depends on when a transplant becomes available for Anthony,” Colleen LaPenna said.

The community is stepping forward to help raise about $60,000 for transplant-related expenses.

In May, the Stadium Sports Tavern is hosting a golf tournament and proceeds will go to the Children’s Organ Transplant Association in honor of Anthony.

Customers have been touched by the boy’s strength.

“For a young child who’s just four years old, that just hits you right in the heart,” said Harvey Auger, the tournament’s organizer.

Registration for the golf tournament, which will be in Waxhaw, has just started. CLICK HERE for more information. 

Read more on Anthony’s story at WSOCTV.

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