By Scott Brinton
Every six months, Ann Marie Cimmino and her sons, Greg and Nick, fly to Florida. They don't go for the sun and surf. There are no Disney adventures on their agenda.
Greg and Nick, 12 and 10, respectively, are taking part in a medical study that may one day cure a terrible disease for tens of thousands of people. The brothers suffer from mitochondrial myopathy, a degenerative neuromuscular disease with no known cure. It strikes roughly one in 9,000 people, according to the nonprofit Mitochondrial Research Society. It is an inherited ailment that affects each victim differently.
Greg's muscles can't break down lactic acid. So, if he runs across a field, he seizes up in painful spasms. It's much like getting a cramp all over your body that lasts for hours. "Ten feet and I'm done," Greg says. He needs a wheelchair if he must walk any significant distance.
Nick suffers from uncontrollable seizures. His first came on suddenly at the East Meadow Library three years ago. No one knew precisely what was happening to him. It looked as if a heart attack had struck. "It was the scariest thing, seeing a 7-year-old like that," says Ann Marie.
Mitochondrial myopathy attacked Ann Marie's heart when she was in her 20s, nearly destroying the muscle. She received a transplant at Columbia-Presbyterian Hospital in Manhattan in 1988. She then became the first transplant patient on the East Coast to give birth. The Daily News published a big story on her.
Subhed: Hope for the future
The Cimminos' hope for a cure lies in a drug now in development at Shands Hospital at the University of Florida in Gainesville. Ann Marie can't take the medicine because it causes a loss of sensation in her extremities. But so far, Greg and Nick are handling the medicine, which the Federal Drug Administration hasn't yet OK'd for sale on the open market. Getting the FDA's seal of approval may take years.
Meanwhile, every six months, the Cimminos head south like three snowbirds. At Shands Hospital, Greg and Nick undergo a battery of tests to ensure that the medicine isn't hurting them and to check how well it's working.
The drug appears to reduce mitochondrial myopathy's awful effects for Greg and Nick, but not completely. And their future remains uncertain. Like their mother, either may need a heart transplant, which offers no guarantees.
Ann Marie's heart replacement is showing signs of wear and tear. She may require a second transplant in the future. And she recently developed skin cancer. She takes 30 pills a day.
In addition to the physical and psychological hardships that the Cimminos are battling, they also face staggering medical bills. The co-payments on one child's medicine alone add up to $6,000 a year.
Subhead: Family fund-raiser
Greg and Nick are clearly good kids. Greg, a student at Kellenberg Memorial High School in Uniondale, loves science and hopes to become a doctor. He recently earned first place in the Nassau County Science Olympiad for a homemade catapult that hurled a 40-gram sack of lentil beans 36 feet.
Nick's passion is baseball. He plays on a travel team that his dad, Ed, coaches. Nick, who attends Gunther Elementary School, dreams of making the major leagues.
The Cimminos don't curse their fate. Ann Marie says, "You make due. You laugh things off. Being positive gets you through the day."
She speaks lovingly of her husband, an electrician who works around the clock to support his wife and kids. The Cimminos savor their quiet moments together, lounging around in the new den that Ed built at the back of their home. And the family is heavily involved in raising money for the Make-A-Wish Foundation, a nonprofit group that grants the fondest wishes of children suffering from the worst diseases.
Three years ago, the Cimminos started their very own "Wishes for the Kids Fund-raiser." It began small. They hosted a party for family and friends at their home. People offered donations, and the Cimminos collected $1,000. Last year, they moved the event to the North Bellmore Fire Department and held a series of raffles, with items donated by local businesses. They raised $4,500.
This year the Cimminos are hosting the fund-raiser at the East Meadow Fire Department on June 4, and they hope to top last year's donations. They expect to, seeing as how they have amassed 200 raffle prizes, ranging from Mets and Yankees tickets to gift baskets.
The Cimminos have put months of planning and preparation into the event. They're also receiving major support from Bellmore Beverage Distributor, the Outback Steakhouse in Westbury and the Home Depot in Jericho.
The Cimmino brothers each received all-expenses-paid Disney World excursions through the Make-A-Wish Foundation. Having gotten first-class treatment on their trips, they wanted to give back by raising money so other children can have their wishes granted.
For their extraordinary efforts, the Make-A-Wish Foundation honored the Cimmino brothers at a gala at Chelsea Piers in New York City last week. They joined Gillian Cohen of Merrick as foundation honorees. (See "A story of strength" in last week's issue to learn about Gillian's remarkable fund-raising.)
More than 800 of New York's most influential people were on hand for the gala, and a record $2 million was raised at the event. Nick and Greg spoke to the crowd, telling of their efforts on behalf of Make-A-Wish. The audience laughed and cried and agreed that they are two very special children.
Patricia Clemency, president and CEO of the Make-A-Wish Foundation, says Greg and Nick are "remarkable children who know the joy of a dream come true, possess the power of wishful thinking and serve as an inspiration to us and to future wish families."
Comments about this story? SBrinton@liherald.com or (516) 569-4000 ext. 203.
