The Montelone siblings are part of a growing number of people with cystic fibrosis who are taking advantage of the health benefits that come with surfing. Since researchers realized that the salt water in the ocean helps clear out the thick mucus that builds up in patients' lungs, organizations have sprung up around the world that teach those with the disease how to "hang 10." "We have found the silver lining to it all and that has been through surfing," Paulette Montelone said on a recent summer day while her five children were out in the water. "It's helping them breathe better ... but it's also helping us, as a family, enjoy something together."
The average lifespan for someone with cystic fibrosis is about 40, but many patients don't make it past their teens. The genetic condition, which must be inherited from both parents, affects around 70,000 people worldwide. There is no known cure, but about a decade ago, doctors in Australia noticed that patients who surfed seemed to breathe easier. Studies later resulted in new saline treatments for patients in 2006 based on the salt water discovery. "They saw a big difference in a lot of things: in lung function, in need for hospitalization, in how well they felt," said Dr. Bruce Nickerson, a lung specialist at the Children's Hospital of Orange County.
The discovery also led to the development of organizations like the Mauli Ola Foundation, which means "breath of life" in Hawaiian. The organization pairs patients with professional surfers, including Kelly Slater and Sunny Garcia. Known as the "Brady Bunch" of the cystic fibrosis world, the Montelones have a 12-year-old son named Michael and two sets of twins — Grace and Gavin, 8, and Brooke and Brian, 10.
In 2008, Gavin tested positive for the disease after being taken to a specialist for persistent sinus problems. After Gavin's diagnosis, the Montelones had all of their children tested and learned that Brooke and Michael also had it. "The people who told us were so serious about it. They talked about children that pass away and the seriousness and it was a huge, frightening kick in the gut," Paulette Montelone said. Between Michael, Brooke and Gavin, the family visits the doctor at least once a month with appointments that last up to six hours. In order to be able to do all of their treatments and still get to school on time, the kids wake up just after 5 a.m. every day. During one of their daily treatments, the kids wear a vibrating vest that shakes them to break up the mucus in their lungs while inhaling hypertonic saline.
The family treks from their inland home to the beach at least once a week every summer, often camping for days at a time. They do their treatments on the beach in between surfing sessions.
Every winter, results from Michael's lung function tests go down by about 5 percent, a cyclical decrease that is a constant and scary reminder of what lies ahead. But every summer, when he gets back in the water, the numbers bounce back, giving his parents a sliver of hope.
http://www.chinapost.com.tw/guidepost/sp.asp?sC=a ˙資料來源
留言列表
