Howard Beach mom on a mission to find a cure

THE COURIER/Photo by Terence M. Cullen

Nicholas Caligiuri for the most part is your average sixth grader.

He likes playing football, watching TV and banters with his mom, Erin Phillips, as he sits at the kitchen table of their Howard Beach home munching on Goldfish crackers.

When Nicholas, now 11, was five years old, he was diagnosed with polycystic kidney disease (PKD), a genetic kidney ailment that causes cysts to grow on the organ.

The disease, doctors say, is hereditary, and Nicholas’ father is also afflicted. “We kind of knew it was going to happen,” said Phillips.

It is something he’ll have to monitor for the rest of his life, especially as he gets older, said his mom. The cysts can prevent the kidney from doing its job properly, and can cause high blood pressure and kidney stones, among other things. As the number of cysts grows, Nicholas could potentially need dialysis or a kidney transplant by the time he’s 50.
PKD affects more people than cystic fibrosis, muscular dystrophy, hemophilia, Down syndrome and sickle cell anemia combined, according to the PKD Foundation.

At first it was one cyst on his left kidney and two on his right, but now, almost seven years later, there’s a few more.

“We just have to basically monitor it right now,” Phillips said. “Right now they have been growing, they have been multiplying.”

Phillips said her son can go about his normal day like any other kid, so long as he maintains a healthy diet that includes a lot of water. She is cautious, however, and said she’s taught him what warning signs to look for.

Nicholas, she said, knows to alert her immediately if there is blood in his urine or has a stomach ache, which might signal that one of the cysts has burst.

Because Nicholas has a cystic disease, Phillips said the rest of his body has to be monitored, including getting a brain scan every three or four years to ensure none are growing in his head. If he ever gets a headache, he has to alert his mom — just in case.

It has been Phillips’ personal mission to inform people of the disease and advise people with a family history of PKD to get tested. To raise awareness, she has organized a yard sale and a walk since 2006, when her son was first diagnosed. Between 2006 and 2012 she’s raised about $9,000 and taught more people about the disease.

“There’s lots of people with it that probably don’t know they have it,” she said.

The collected money has been donated to the PKD Foundation, which is the closest it has ever been to finding a cure or treatment for the ailment in its 30 years of research. The PKD Foundation is currently testing a new drug, she said, which could potentially stop cyst formations on the kidney.

While Nicholas is conscious of his problem down the road, he’s more focused on being a kid and one day playing football for either the New England Patriots or the San Francisco 49ers.