By Peter McDermott
Tricia McDermott has one ambition for her younger daughter, who is 4: "That she gets to do whatever she wants to do."
As it is, Aine Grace McDermott Stevens of Stamford, Conn., is a happy, vibrant child. But she has one big mountain to climb in life: she's got cystic fibrosis.
In Ireland, which has the highest rates of the disease in the world (25 percent of people carry the gene), a sufferer has a life expectancy of 21 years. In the United States, where there are at least 30,000 sufferers, that figure is 37 years.
"The weather helps, but it's 31 years in England, so it's not just that," McDermott said.
"Aine gets a lot of proactive treatment to keep her well, but a protein gene that affects the sodium processes is missing," said her mother. "Everything in her lungs turns to glue.
"Otherwise, she's a typical, precocious 4-year-old, one with an 8-year-old sister [Fiona]," added McDermott, who was born in the United States but spent most of her childhood in Ireland. "She wraps her grandparents around her finger." On the maternal side, they are Jim McDermott, from Tulsk, Co. Roscommon, and Annie (nee Fogarty) McDermott, from Ballycomber, Co. Offaly.
Aine was born on March 16, 2006. "My doctor was hoping for a St. Patrick's Day baby, and he's Jewish," McDermott said, laughing.
Although, she knew her Albany, N.Y.-born husband Jim Stevens carried the gene, tests initially suggested that she didn't. And there was no history of the disease in her extended family, which includes 57 first cousins in Ireland, England, Australia and the U.S. Doctors only discovered she did have it after her second child's birth.
Families rely greatly on the new drug treatments and cutting-edge technology such as the Vest, which is applied to Aine daily. They're hopeful that the National Institutes of Health, which is headed by the discoverer of the cystic fibrosis gene, or organizations it funds can make significant breakthroughs in coming years.
Meanwhile, families are raising money for the Cystic Fibrosis Foundation. To that end, Stevens, an investment banker with Barclays, is running the New York Marathon on Nov. 7.
"He hates running, but he'll do it for the 30,000," said his wife.
To help Jim Stevens and the Boomer Esiason Foundation (which has 100 runners raising money for CF) visit and donate at http://www.firstgiving.com/angelsforaine.
