GUILDERLAND, N.Y. (NEWS10) – A Guilderland teen’s mission hasn’t changed: to help find a cure for a rare disease affecting his sister and stepfather.
Ten years isn’t the only thing separating Michael Ardito and his younger sister, Kati.
“We tell her she has special blood,” their mother, Nicole Harrington, said.
It’s that special blood that bonds her to her father, but it also makes her sick sometimes.
“And it really didn’t hit her until she had a stomach swell, and it’s like watching somebody in labor,” Harrington explained. “It was the worst day of all of our lives.”
Kati and her father suffer from a rare hereditary disease called Hereditary Angiodema, or HAE. It causes extremely painful and potentially life threatening episodes of swelling in various parts of the body.
Kati, 6, started to get symptoms the past few years, but they’re expected to get worse as she ages, especially during puberty.
“Mike understands that, so he feels like he’s in a race against time,” Harrington said.
This race doesn’t end like his others when he touches the wall, but he’s swimming anyway toward a cure. For the third straight year, the 16-year-old will swim across the Boston Harbor in an effort to raise money and awareness for HAE.
His swims have already given him the opportunity to take his concerns to Washington, D.C.
“Talk to some of the representatives of Congress about trying to get different bills passed to help people with rare diseases like HAE,” he said.
Like his sister, who’s too young to fully appreciate the work her big brother is doing for her. But Ardito’s not in the fight for the recognition.
“If these swims help find a cure to her disease and by the time she’s 16 she doesn’t have to worry about it anymore, she could hate what I’m doing right now for all I care,” he said.
Until there’s a cure, he and his family are celebrating small victories like the treatment now available in emergency rooms that can help ease swelling. It was recently approved for kids.
“When I saw that the FDA had approved this medication for kids, the first thing I did was pick up the phone and call Michael cause I do think that everything he’s doing has made some difference,” Harrington said.
Ardito will swim on September 17 as part of Boston Sharkfest Swim.