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"Six years ago, Sherry Jay realized her five-month old son, Brandon, was ill and that no one was listening to her. Reading about cystic fibrosis on the Internet, she realized quickly that Brandon's symptoms fit -- he was listless, not gaining weight, with sweat his mother described as salty as a pretzel. When she told her pediatrician, the doctor told her she was wrong -- essentially to stop bothering the office. She had to beg the staff at Danbury Hospital to do a simple blood test, which proved, conclusively, that Brandon had cystic fibrosis. Finding that out has helped Brandon Jay to be the active, on-the-go kid he is. The sooner you treat cystic fibrosis, the better. \"He's doing well,'' Sherry Jay said. But Brandon's condition led Sherry Jay and her husband, Jeremy, who live in Bethel, on a six-year course in political education. Believing that all babies should be tested at birth for cystic fibrosis -- the most common genetic illness in the United States -- they got their legislator, then-State Sen. David Cappiello of Danbury, to introduce a bill requiring such a test. Then they waited. And waited, year after year. Sherry Jay testified at the state Capitol in Hartford. They collected signatures to show public support for the bill. Every year, it died somewhere along the line. \"And I am not a patient person at all,'' Sherry Jay, 38, said. But finally, this year, the work paid off. The General Assembly approved the bill. Last month Gov. M. Jodi Rell signed it into law. \"I am so thrilled and grateful that there will be no stories like ours,'' Sherry Jay said. \"It's vindication,'' Jeremy Jay, 37, said. \"But I don't understand why it wasn't done from the beginning.'' \"It's always been a puzzle why this didn't pass earlier,'' said Kathy Sabbagh, whose son, also named Brandon, died in 1998 of cystic fibrosis at the age of 23. \"Our son did not get diagnosed until he was 3,'' Kathy Sabbagh said. \"That meant he spent the first three years of his life being sick and miserable. And he couldn't tell us what was wrong. He was a baby.'' Cystic fibrosis, which affects about 1.000 newborns in the United States each year according to the Cystic Fibrosis Foundation, is a disease caused by the pairing of defective genes -- both the mother and father have to have them and pass them on. The combined genetic flaw causes the body to produce a thick mucus that can collect in the lungs, impairing breathing. It can also gather in the pancreas, impairing digestion by inhibiting the enzymes needed for digestion. Children with cystic fibrosis used to be lucky to live into their teens. Today, with treatment greatly improved, the average life span for people with cystic fibrosis is now 38. \"That age continues to grow,'' Sherry Jay said. \"It's really, really encouraging.'' When the Jays began their campaign, they thought getting infants tested for cystic fibrosis would be easily done. That's because the state of Connecticut already tests newborns for 14 different diseases, none anywhere near as common as cystic fibrosis. \"For some of the diseases they test for, it's one in 50,000, one in 750,000,'' Sherry Jay said. Nor would it have required anything more than another test of the blood sample hospitals take from infants to look for the other newborn illness. \"It made sense,'' Sherry Jay said. But sense and the political process do not always go hand in hand. Cappiello would introduce legislation requiring the testing every year, only to see it fail. \"Sometimes, it was a matter of time,'' said Cappiello, who now works at the state Capitol as a senior policy advisor to the Senate Republican Caucus. \"Sometimes it was a matter of politics. This was a no-brainer, but the legislative process can be a very slow one.'' But legislators who know nothing about cystic fibrosis needed to be educated -- work that people like the Jays, the Sabbaghs and others carried out. Each year, the bill moved a little further down the line. \"Professional lobbyists have an impact,'' said State Sen. Michael MacLachlan, R-Danbury, who succeeded Cappiello in the Senate in 2008. \"But grassroots activism -- the work the Jays and Sabbaghs do -- is so much better. It really is important.'' And finally, there was the realization that Connecticut was falling behind the rest of the nation in testing for cystic fibrosis. \"Of the 50 states, only Connecticut and Texas didn't test for it,'' Sherry Jay said. Brandon Jay, at 6, is finally gaining weight, thanks to the enzyme supplements he takes, and a feeding tube that gets extra calories into his body. \"He's a very happy boy,'' Sherry Jay said. Their daughter, Rachel, 4, and born without cystic fibrosis, is equally lively. For the Jays, the new testing for the disease that left Brandon so ill is satisfying for them -- it's nice to finish a job you started. But it's more satisfying for people they'll never know, who will benefit from their six years of effort \"There will be no more babies leaving the hospital with an illness their parents don't know about,'' Sherry Jay said. \"There will be no more parents searching the Internet, trying to find out what's wrong.'' Contact Robert Miller at bmiller@newstimes.com or at (203) 731-3345. Cystic fibrosis: The most common genetic disease Affects about 30,000 American children and adults About 1,000 babies born with the disease each year Affects about 1 in 3,300 Caucasians in the United States. Less common among blacks, Hispanics, Native Americans and Asians Genetic mutation must be in both parents to have a child born with cystic fibrosis Causes the build-up of heavy mucus in the lungs and pancreas Causes infections and pulmonary diseases in the lungs Causes digestive problems and malnutrition in the pancreas Because of new drugs and better treatment protocols, children with cystic fibrosis -- who used to live only into their teens -- now live into the 30s and 40s, and their average lifespan is on the rise."
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