WEDDINGTON – When Colleen LaPenna learned her 4-year-old son Anthony needed a life-saving transplant, she never dreamed her family, friends and community would stand behind her like they have.
Now, more than halfway to their $60,000 goal, LaPenna and her family can’t begin to explain the support they have received.
“The kids in our neighborhood are wonderful,” she said. “We wouldn’t have gotten through everything we have without our wonderful friends and neighbors.”
Anthony has Chronic Intestinal Pseudo Obstruction, a rare small intestine disorder where his organ doesn’t absorb all of the nutrients from food and water like it should. The disease also damages the liver. Anthony spends about 16 hours a day hooked up to his Hickman Line to make sure he receives necessary nutrients, sometimes even carrying the pack around as a book bag with the tube running up his shirt.
The National Organ Transplant Association added Anthony to the list for a small intestine and liver transplant last February. His liver can come from an adult donor, since only part of the liver is needed, but the small intestine must come from a child younger than him.
“It’s one of those bittersweet things because my child has a chance because something horrible has to happen to another family,” LaPenna said. “I struggled with that a lot at first.”
Although he spends a majority of his day attached to his Hickman Line, LaPenna said most people never notice Anthony is struggling with his illness every day.
“It’s funny because people who don’t know what’s going on with Anthony have no clue what’s going on with Anthony,” she said. “He has 100 percent developmentally met all of his milestones.”
With the small intestine transplant being a fairly new operation, the LaPenna family had to find a specialist, and eventually stuck with Duke University Medical Center.
The family will have to stay in Durham while Anthony is in the intensive care unit, in-patient care and for some time after he is released from the hospital.
“Small intestine (surgery) is one of the most rare … kind of transplant,” LaPenna said. “It was experimental until 2001, so they don’t have a lot of data to go back on. It’s a hard organ to transplant; it’s the most rejected organ because it has a lot of bacteria in it.”
LaPenna and her husband, Frank, hope the money they raise will help pay for their living expenses while having to stay two hours away from home. The family has raised $34,000 of their $60,000 goal, and is currently holding a long-term 50/50 raffle where the money will be split between the winner and Anthony’s family. If all of the tickets are sold, each party will receive $10,000. The drawing for the raffle will take place at Stadium Sports Tavern, 8155 Ardrey Kell Road in Charlotte, on Aug. 19, a Monday, at 7 p.m.
The 50/50 raffle isn’t the only way to donate to the LaPenna family. The Children’s Organ Transplant Association has set up a fund for Anthony, where all of the money raised will go directly to his medical needs.
For more information about Anthony and his family, or to make a donation to COTA in honor of Anthony, go to www.cotaforanthonyl.com.