PaigePaiges Page

by Joseph Shapiro

Morning Edition, November 20, 2008 · Across the country, state health care programs are cutting back on funding for families with disabled children. The result is that more families struggle to get the health care they need for their children with disabilities and serious health care needs.

Click HERE to visit Paige’s CFF Great Strides donations page:

Paige is a Mountaintop resident who has been diagnosed with CF. Anyone wishing to learn more about this genetic disease or wishing to join our walking team is welcome to attend. Linda Capozello, Executive director of Northeast PA Cystic Fibrosis Foundation, will be presenting information on the disease. For more information, contact Diana Ceaser Barrett at either 570-504-1671 or dbarrett@ptd.net.

Imagine the joy of having a child, and then being met with the stark reality that your child is not well. Imagine learning, just two weeks after her birth, that she has cystic fibrosis, a serious medical condition which will lead to a life of physical hardships and might decrease her lifespan by more than half. That’s what happened to Lisa Cummings of Mountaintop, whose daughter, Paige, now 15 months old, was diagnosed with the illness shortly after birth. ‘I was devastated,’ says Cummings. ‘But more so, I was in the dark. I’d heard of it, but I really didn’t know what it was, or if it was fatal, or if there was a cure.’ Cystic fibrosis, in simplest terms, is mucus that builds up in the lungs. As patients get older, the problem becomes more severe. Pennsylvania, says Cummings, is one of only 13 states in the nation that test for the illness at birth. She says that when Paige was born, there weren’t any true telling signs of a problem at first and thankfully, she is still relatively healthy. Still she must endure breathing treatments twice per day and chest percussions twice per day. She is also on special vitamins and must take enzymes every time she eats. ‘It’s pretty much just preventative treatment,’ says Cummings. ‘There is no cure.’ On Thursday, nine area bands will team up at Nightcaps in Edwardsville to try and change that. The second Weekender ‘Cystic Fibrosis Benefit’ will feature performances by Pearson Towers, Panacea, Ever Rage, Ashfall, The Black Orkid, Lessen One, Fighting Zero, OurAfter and Owen’s Grudge. All of the bands are donating their time and talent to help raise funds for the Cystic Fibrosis Foundation. ‘It’s amazing,’ says Cummings, when talking about the benefit, adding that even in the past few years, great strides have been made in combating the illness. Paige, according to the Cystic Fibrosis Foundation, is one of approximately 30,000 people in the United States that have cystic fibrosis. An additional 10 million – or about one in every 31 Americans – are carriers of the defective CF gene but do not have the disease. The disease is most common in Caucasians, but it can affect all races. Rachel Pugh, general manager at the Weekender and cousin of Paige, is the organizer of Thursday’s benefit. In addition to music, there will also be commemorative t-shirts, free pizza from Little Caesar’s pizza and raffles items from several of the show’s sponsors. This is the second consecutive year that Pugh has put her time and effort into raising funds to combat the illness. ‘Sometimes when it hits close to home, suddenly something that seems so abstract becomes very real,’ says Pugh. ‘When I found out that Paige had this disease, and I knew I was in a position to do something to not only help possibly expand her lifespan, but also thousands of other people. It’s obviously something I didn’t need to think twice about. It was started because of Paige, but it’s for everybody that suffers from this terminal disease.’ Linda Capozello, executive director of the Northeastern Pennsylvania Chapter of the Cystic Fibrosis Foundation says that in 1955, children with CF usually did not live long enough to attend elementary school. In 2006, however, the average age of survival has increased to almost 37, up two years from 2005. Fundraisers like Thursday’s musical event are part of the reason. ‘The vast majority of our funding comes from community based programming,’ says Capozello. ‘When local people take it upon themselves to raise funds in this way, it’s really an extraordinary way to raise monies for important science.’

Info: 970.7398