Shop Tonight in Hastings to Support Cystic Fibrosis Research

Hastings' 12 year old Clara Charles enjoys acting and hanging out with friends.  She also participates in gymnastics and basketball.

But unlike other 6th graders, Charles has to get up early every morning to undergo a daily treatment regimen for Cystic Fibrosis.

A genetic disorder that "that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body, CF is one of the most common chronic lung diseases in children and young adults. If untreated, it can be life-threatening.

"I wake up Clara at 6:30 every morning," said Eileen Charles, who has two other children—including Clara's twin brother. "Before school, she wears an inflatable vest that helps to shake up the mucous buildup in her lungs. While wearing the vest, Clara also takes a couple of puffs of an an inhalable drug that opens her windpipe and takes a special hypertonic saline (or salt) solution."

After all that, Clara's good to go.

"It's funny," her mom said. "Because of all this attention to her lungs, Clara's voice and acting coaches say she projects better than almost any of the other kids."

In fact, Clara will play a lead role in local theater troupe Clocktower Players' production of State Fair coming up in January.

Although treatment and management techniques for CF have come a long way since Clara was born, there is still no cure.

"I have been very active with the Cystic Fibrosis Foundation from the beginning, working in fund-raising and communications," Eileen Charles said. "The goal of the foundation is to raise money for research and development for medications and new treatments for CF patients. It has recently been ranked one of the top charities in which donations are used in a direct and meaningful way."

Tonight (Tuesday, Dec. 13), , owner of and Re-Fit will keep her shops open late (from 6 to 10 p.m.) to hold a Cystic Fibrosis fundraiser and holiday party. Wine will be provided and 15 percent of all the proceeds she makes from sales will go to the Cystic Fibrosis Foundation.

"Lisa [Globenfeld] has been incredibly supportive of the foundation," Eileen Charles said. "We have done this event since 2008 and generally raise around $1,000."

Direct donations are also, of course, accepted. (You can make a donation here.)

Eileen Charles said Clara's prenatal diagnosis was also a "Hastings Story."

"I knew I was a carrier for CF and it turned out my husband was as well," she said. "I was carrying twins, so we had them tested and found out that Clara had the disease, while her twin brother did not."

Charles soon found out that one of the lead CF researchers, Dr. Lisa Saiman, was also a Hastings resident. Saiman put Charles in touch with a highly-recommended pulmonologist—even before Clara was born.

"The doctor told us that if I had been carrying a child with Cystic Fibrosis 15 years ago, it would have been a huge problem," Charles recalled. "But with all the cutting-edge treatment and detection methods, Clara has been doing great."

While some CF kids are hospitalized multiple times per year, Clara hasn't had a hospital stay since she was 5.

"Whenever we take her for her three-month check-up, the doctors say, 'A lot of people must be watching out for her.'"

While admitting her illness can be a pain—"sometimes the treatments can be tiring, which is annoying," Clara said—there aren't many things she can't do as a result of it.

"Oh, yea, I can't go in hot tubs or Jacuzzis because there can be too much bacteria," she said. (Editor's note: If there's that much bacteria in a hot tub, I'm not sure I want to go in either...)

"Shop for a Cure" begins at 6 p.m. Tuesday, Dec. 13 at Chelsea's and Re-Fit (on Spring Street). Globenfeld has said she will extend the fundraiser for the next couple of days for customers who mention that they want a portion of their expenditures to go to the Cystic Fibrosis Foundation.

For more about CF visit http://cff.org/