Florida Keys News - Key West Citizen
Friday, December 20, 2013
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Nonprofit's house respite for cystic fibrosis patients

The salt air of Key West may not be much help to electronics or car engines, but for people suffering with cystic fibrosis, it's literally a breath of fresh air. Recent research has shown that breathing salt air is highly beneficial to victims of this hereditary, noncontagious disease.

Now a nonprofit organization has created a respite in the Southernmost City where cystic fibrosis patients and their families can stay. During the monthlong visit each family is allotted, breathing becomes easier for the patients, and many have found that they don't even need to take their medication.

The New York City-based Child Life Society purchased a three-bedroom bungalow at the corner of Northside Drive and 18th Terrace in May 2012.

The nonprofit then spent a year removing mold and renovating the structure until it was up to the strict standards of sterilization needed by cystic fibrosis patients.

Weissman House, named for a generous benefactor in New York, finally received its first visiting family in mid-September. A waiting list has been set up for clients eager to stay at the house, which can sleep up to 11. The house comes fully stocked with food, and clients are given a rental car to drive. The plane tickets are free, too.

Since the house opened, each client of Child Life who has stayed there has reported improved health to its director, Chaim Wolkenfeld. In fact, the program has been so successful that the organization is now in the market for five more houses on the island.

"People suffering with cystic fibrosis need a high-salt and very clean, purified climate, well away from pollution," Wolkenfeld said. "This kind of climates breaks up the mucus in their lungs very, very quickly, and leaves them feeling much better. It's almost like a miracle cure for them."

Cystic fibrosis, also known as "mucoviscidosis" is a disorder that mostly affects the lungs, but also the intestines, pancreas and liver of its victims. The mucus generated in the lungs interferes with breathing, and must be drained from time to time. At present, those suffering from cystic fibrosis have a median life expectancy of 32 years.

The Child Life Society, which was founded in 1999, used to send its clients to Tucson, where the arid climate helped to dry out the mucus in their lungs. However, a 2007 piece in the New England Journal of Medicine changed all that.

"The article compared the life expectancy of Australians with cystic fibrosis with those of Americans and found that the Australians, who mostly live on the coasts in a salt air climate, lived longer," Wolkenfeld said. "So we changed our strategy. For the first year after the article came out, we were sending clients to Puerto Rico and the Virgin Islands. The clients reported feeling much better during and after their trips, but some of them complained about the medical services available in those places, and we decided to look for a longer term solution."

At this point, Bert Zakroff, who serves as the Child Life Society's travel and construction director, suggested that the organization consider Key West for its salty air climate, and proximity to the mainland.

Initially, Zakroff put the clients up in rented condos, but the cost of such rentals, and the difficulty of finding vacancies during peak vacation times, inspired the organization to consider purchasing a property of its own.

"Key West is actually perfect for us," Zakroff said.

"It's got the salty air and no air pollution, yet it's an English-speaking place, and close to the hospitals in Miami if they're needed."

Zakroff's own daughter, who suffers from cystic fibrosis, visited Key West with her father and found that the climate did wonders for her. She was unable to proceed with her complicated treatment regimen while on the island, but found she didn't need it anyway.

"She asked me if we could move her permanently," said Zakroff, who lives in Cape Girardeau, Mo. "And I'd love to, but it's just too expensive for us."

Having received positive feedback from the families who have stayed at Weissman House, Wolkenfeld now has started a fundraising campaign to purchase more houses in the Southernmost City. He's also engaged a Realtor to keep an eye out for suitable properties.

Most of the families involved in the program happen to be Jewish and from the New York City/New Jersey area, but Wolkenfeld said the relatively young organization is doing its best to expand to serve the needs of all people fighting cystic fibrosis.

"We're always looking for donations and volunteers," Wolkenfeld said. "Ultimately, we want to serve as many people as we can."

For information on the Child Life Society, go to www.childlifesociety.org.

tschmida@keysnews.com

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