Swim-4-Sweat touches hearts

When James Paisley’s son Ty was first diagnosed at the age of 15 months with the genetic disorder hypohidrotic ectodermal dysplasia, there were plenty of questions, fears and anxieties, but few answers and reassurances at hand.

There are over 150 different kinds of ectodermal dysplasia — in Ty’s case, the effects are sparse hair, no teeth and the inability to sweat — but because of the general rarity of the condition, treatment and counseling are often not readily available.

That’s when the 1988 Glendale High graduate turned to the National Foundation for Ectodermal Dysplasia, recognized as the only charity in the United States fully dedicated to helping families understand and cope with the various forms of the disorder.

In addition to providing parents with the facts and information they need and raising funds for research to find a cure, the NFED establishes a nationwide community of families affected by HED through an annual national conference and retreats and recreational events by region.

“They tell you what to expect and the challenges and, of course, it’s up to every family and parent to deal with it differently,” James Paisley says. “But with the resources and the families that they represent, you hear it all. If you go there as a new family, you learn that pretty much everything that can be thrown at you, some family has experienced it and that’s why it’s such a giant, valuable database.”

Today, Ty is a healthy, energetic 8 year old and the Paisley family has adjusted to what was once a frightening, unknown factor in their lives.

To show his appreciation for the NFED’s help and as a tribute his son, James Paisley is about to embark on an unusual and grueling endeavor — the “Swim-4-Sweat”, his own unique idea for a fundraiser for the NFED centered around the annual Maui Channel Swim in Hawaii.

After two years of training and one injury setback last year, Paisley’s brainchild will come to life on Sept. 5. when he will undertake an approximately 10-nautical mile open-water swim from the island of Lanai to the island of Maui.