Mt. Airy mother of child with CF finds needed support online

Published 12:00 am Saturday, May 15, 2010

By David Vitrano


MT. AIRY – Heather Curry’s world changed forever 14 years ago when her son, Chase, was diagnosed with cystic fibrosis at the age of 2 1/2 months.

“I had never even heard of cystic fibrosis before he was diagnosed,” said Curry, a lifelong resident of Mt. Airy.

CF is a genetic disease that causes the body to produce excessive amounts of mucus, which builds up in the lungs and pancreas.

In the ensuing years, she and her son have struggled with frequent doctor appointments, daily medication and the occasional trip to the hospital.

“It’s rough. It really is,” she said.

Although the drive to Tulane Medical Center takes an hour, Curry said that is not the biggest frustration when it comes to dealing with her son’s disease. Instead, it is the lack of support and feeling of isolation that worries her most.

“The only support I did have here moved to Mississippi,” she said. “It was my parents.”

But Curry found a form of support in a place that had been right under her nose. One evening while spending time on Facebook, she hooked up with a group called “Fighters Against Cystic Fibrosis.”

Started in Florida by a lady Curry affectionately calls “Miss Ellie,” the group has a two-fold purpose. The first, of course, is to provide a support network for those affected by CF. The second and perhaps larger purpose is to raise awareness of the disease. Curry said the group currently has about 12,000 members.

“From what I understand, there’s no government funding for cystic fibrosis,” said Curry. The Facebook group aims to change that.

Fans of the group are asked to sign a virtual petition and, according to Curry, when Miss Ellie gets enough virtual signatures she will take the petition to the powers that be to seek assistance.

She’s hoping the petition may eventually lead to an annual telethon for the disease, much like the telethon benefiting muscular dystrophy, which airs on public television each year.

And for Curry and all the others around the globe affected by CF, the help cannot come soon enough.

“The life expectancy right now is 37 years old,” said Curry, adding, “Most of them don’t make it out of their 20s.”

Since October, Chase has had to be homeschooled. Curry said,

“His immune system just isn’t as strong as a normal kid’s would be,” she said.

What’s more, the medications Chase must take daily have increased over the years.

Curry said taking care of her son is “a full-time job and a half.”

“My work is never done,” she said. “But I don’t think I’d trade it for anything in the world.”