GUILDERLAND — Michael Ardito may be just a junior in high school, but he’s had some extraordinary experiences in his young life, as he continues to try to raise awareness — and funds — to help other families like his, that include people who suffer from rare diseases.

Ardito’s sister, Kati Harrington, age 6, who will soon enter the first grade at Guilderland Elementary, has the little-known hereditary angioedema, or HAE. So does his stepfather, Kati’s father, John Harrington.

On Sept. 17, Ardito, 16, will swim across Boston Harbor for the third time, in the annual Sharkfest Swim, to raise money and awareness. Participating with him will be several of his teammates on the Guilderville varsity swim team, several of their parents, and the team’s coach, Vaclav Sotola. Also doing the swim will be Ardito’s mother, Nicole Harrington.

Michael Ardito’s mother said of her son and his friends who will be swimming, “When I was 16, I certainly wasn’t as selfless as they are. I hope they look back on this and realize how much it will mean to Kati when she is old enough to really comprehend what they are doing for her.”

The group will be swimming for HAE even though the overall event — which can accept as many as 800 participants each year — is simply an open-water race, and not a charity event.

This spring, while he was still a high-school sophomore, Ardito was flown to Washington, D.C. by the HAE Association, to meet with members of Congress one-on-one, to tell them about the disease.

“They had read up on it before we came,” he said recently, “so they knew a little bit about it, but most of them had never heard a firsthand account.”

Michael Ardito explained HAE this way: “There’s something wrong with a gene, so you’re not releasing an inhibitor that prevents swelling.”

HAE patients have a defect in the gene that controls a blood protein called C1 Inhibitor, according to the Hereditary Angioderma Association, which explains that, because the defective C1 Inhibitor does not adequately regulate various biochemical interactions of blood-based systems, chemical imbalances can result in swelling in various parts of the body, including hands, feet, face, and airway. Patients experience excruciating pain, nausea, and vomiting when swelling occurs in the intestinal wall. Airway swelling is always particularly dangerous.

There’s a lot of variation in severity, Michael Ardito said. Some people might never have an attack, and only find out that they have the disease when they have a child born with it. For others, going two hours without an attack might mean it’s a good day, he said. His stepfather’s worst attack was an airway swelling that resulted in his being intubated and placed in a medically induced coma that lasted for days.  

Michael Ardito has raised just over $17,000 over the last three years combined, his mother said, adding that the corporate sponsors for their participation in this year’s race are CM Fox Realty and Latham Medical Group. CM Fox has been a sponsor all three years, she added.

But what Michael Ardito is most excited about, his father, Gary Ardito, said, is that, in June 2016, for the first time, the Federal Drug Administration gave its approval for use with pediatric patients of a drug that can lessen the severity of HAE attacks.

The medicine that Michael Ardito’s stepfather takes is “incredibly expensive,” Nicole Harrington said: $48,000 per month. Luckily, she said, they have good health insurance; not everyone who has HAE does, and “some people cannot afford the medicine,” she said.

The reasons that it is so expensive, she said, are that the disease is so rare and the drug is a blood product, making it relatively difficult to manufacture.

Kati Harrington is not on medication for now, because, her mother said, “They only do it if you’ve had a number of attack and if the attacks are life-threatening.”

Medications for HAE are given by infusion through a port, and Nicole Harrington is glad that Kati does not need to have a port at this time. Not having medication on hand, though, does mean that Kati’s only recourse in an attack is to be rushed to a hospital.

Kati has not had many attacks, her mother said; the worst was a stomach one that “was probably the worst day of all of our lives,” said Nicole Harrington. It was not life-threatening, she said.

Michael Ardito said of that attack that his little sister just kept crying, “Mommy, it hurts,” all night, and that he lay awake, knowing there was nothing he could do for her.

Has speaking with people throughout the halls of Congress changed his view of what he wants to do with his life?

“It brought to my attention that I don’t want to stop advocating, not only for HAE,” said Michael Ardito, “but also for other rare diseases that bring other families to the same level of hardship that my family’s had.”

Even if a cure is found for HAE, the young man said, “I still want to keep advocating.”