R4Stars News

AFTER 12 YEARS, SHE'S ON HER TOES AGAIN - Darryl E. Owens, Sentinel Staff Writer

Madison DeKeyser is 21/2 and free of cystic fibrosis. He does not require sleep, his mother jokes, and he adores airplanes and Disney movies.

Robyn DeKeyser quit her job at the U.S. Attorney's Office in January 2000, after her health deteriorated with the additional rigors of motherhood.

Since 1989, when scientists identified the defective gene that causes CF,medicine has made great strides in unraveling the genetic makeup of CF. That has lead to earlier detection and improved and more consistent treatments. Now, more people with the disease live into their 30s and enjoy fuller, more satisfying
lives.

At 32, DeKeyser is among the 320 adults with CF living in Florida, which has the largest concentration of CF adults in the nation. But with increased life spans comes another problem -- the cost of staying alive.

The high-calorie shakes she uses to maintain her weight cost $300 a month, and two of the 11 medications she uses daily each cost $1,000 a month. The vibrating vest costs $18,000. Many adults with CF find it difficult to get health-care coverage that meets their needs.

She found help in the Adult Cystic Fibrosis Program, funded by a grant from the state Department of Children and Families and administered by Abilities of Florida in Clearwater. It provides assistance for more than 100 clients statewide, including 30 in Central Florida.

The program pays for DeKeyser's expensive prescriptions, special food supplements, the vest, and for miscellaneous items such as some of her home maintenance (because dust mites can impair her ability to breathe, the program foots the bill for carpet cleaning).

Recently, DeKeyser returned to her first love. She dances four hours a week to strengthen her lungs, and she teaches tots the finer points at Karl DiMarco Studios, just down the street from her home in Lutz, near Tampa.

And last month, she performed publicly, for the first time in a decade, during a fund-raiser for cystic fibrosis.

Just like old times.

She shined.

To contact Abilities of Florida, call toll free 877-FLA-ACFP, or 877-
352-2237. Or contact their Web site, www.abilitiesofflorida.com. For more
information on the Adult Cystic Fibrosis Program, call 727-538-7370, Ext