Blog dedicated primarily to randomly selected news items; comments reflecting personal perceptions

Monday, August 18, 2014

Their Silver Lining

"We have found the silver lining to it all and that has been through surfing. It's helping them breathe better ... but it's also helping us, as a family, enjoy something together."
"The people who told us [three of five children in the family diagnosed with cystic fibrosis] 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. Our life from that moment forward would never really be the same."
Paulette Montelone, San Clemente, California
In this July 24, 2014 photo, the Montelone family, from left, Grace, 8, Brooke, 10, Rob, Paulette, Brian, 10, Michael, 12, and Gavin, 8, pose for a family pi...
In this July 24, 2014 photo, the Montelone family, from left, Grace, 8, Brooke, 10, Rob, Paulette, Brian, 10, Michael, 12, and Gavin, 8, pose for a family picture on the beach in San Clemente, Calif. Three of the Montelone's five children, who have cystic fibrosis, are part of a growing number of people to take advantage of the health benefits that come with surfing. (AP Photo/Chris Carlson)
"I still fear that, like, I'm gonna die or my brother and sister might. I know that could happen but I try and put it in the back of my head so that I can keep moving through all the days."
Michael Montelone, 12 years of age

"The treatment isn't what bugs me. It's how I hear stories of how kids die from CF at a young age. It makes me feel scared about my brothers and sisters -- but when I go surfing, I forget about all of that."
Grace Montelone, 8 years of age

The average span of life for someone struggling with cystic fibrosis is about 40. Many people don't manage to live much past their teen years. This is a genetic condition, inherited from both parents, affecting an estimated 70,000 people worldwide. While there is as yet no known cure, about ten years ago, Australian doctors noticed that patients who ocean surfed appeared to be able to breathe with more ease. Studies that resulted in new saline treatments for CF sufferers in 2006 were based on that salt water discovery.

"They saw a big difference in a lot of things: in pulmonary function, in need for hospitalization, in how well they felt", explained Dr. Bruce Nickerson, pulmonary specialist at the Children's Hospital of Orange County, California. Now, there's a movement to go a step further, with the development of groups like the Mauli Ola Foundation ["breath of life"] in Hawaii where patients are paired with professional surfers who guide and encourage CF patients to learn how to ride waves and through that process experience the ameliorating effect of salt water exposure while taking part in a pleasurable sport.

In 2008, the Montelone parents, Rob and Paulette, took their son Gavin to a specialist because of persistent sinus problems. Although the Montelone parents had no knowledge of cystic fibrosis in their family background, Gavin was diagnosed with CF. When that shock wore off, the parents decided to have all their five children tested And that's when they learned that two others of their children were also affected with cystic fibrosis.

Now, the family makes monthly visits to their doctor for appointments that take up to six hours for treatment. The family travels from their inland home to the beach once weekly in the summer, often camping out there for days at a time. On the beach, between surfing sessions, the three Montelone children with cystic fibrosis do their daily treatments consisting of wearing a vibrating vest to shake up the mucus in their lungs, while inhaling hypertonic saline.

Every winter, results from lung function tests decline by about five percent representing a cyclic decrease, constant and frightening, heralding what lies ahead into their future. In the summer, though, once they're back in the water, the critical numbers bounce back up again. That's why, say the Montelone, they're so grateful for surfing, for the health benefits for their children and because it's something pleasurable and useful they do together as a family.

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