SHAPLEIGH — Make no mistake about it, Valarie Hale is a fighter. Every day, she fights to win ”“ to take that next step on the treadmill, to do research and keep herself up-to-date about her disease, to take that next breath.

On first glance, Hale looks healthy and hearty. Listen to how she breathes, however, and you realize something is amiss.

That “something” is a genetic disorder she’s been living with since she was a child growing up in the Midcoast, but in those days no one knew much about Alpha-1.

Alpha-1 occurs when there’s a lack of a particular protein in the blood, called Alpha-1 antitrypsin. According to the Alpha-1 Foundation, the condition can cause chronic obstructive pulmonary disease, shortness of breath, wheezing, chronic cough, phlegm production and other lung-related issues as well as liver-related problems.

Hale, 43, had asthma as a child and gradually other symptoms developed. She now has 27 percent lung capacity. She’s the second in her family to experience the effects of Alpha-1. In 2002, her sister, Viki, had a double-lung transplant after a five-year wait.

Hale herself is also a candidate for a double-lung transplant. These days the wait is much less ”“ about 120 days ”“ but Hale said she’s put herself on an inactive list, in hopes that stem cell transplant therapy that now uses a person’s own stem cells will have advanced enough by the time she really needs to make a decision.

Sitting in a booth in the restaurant at Shapleigh Corner Store, sipping tea, Hale spoke about her disease and how it has changed her life, her hopes for the future, and the upcoming 180-mile bicycle Trek Across Maine from Sunday River to Belfast June 17-19.

She won’t be riding in the Trek. Her “sweetie,” as she calls fiancé Kevin Kennedy, is captain of the Alpha-1 team that currently consists of six members. Hale is coordinating the team and the fundraising that goes along with it ”“ including raffles at the upcoming antique car shows on April 18 and May 30, the Memorial Day holiday, at Shapleigh Corner Store.

While the April 18 event is largely held inside, the Memorial Day event will see store owners Duane and Bonnie Romano open the outdoor cooking area, and more than 100 motorists bring their antique cars for a “cruise in,” she said. And she’s also looking for additional team members and a corporate sponsor.

Hale worked at the Shapleigh Corner Store until a couple of years ago, when her health no longer allowed it. In fact, until she moved here from Waldoboro, she’s someone who always worked a regular, full-time job and had her own business doing cooking and property maintenance on the side.

“I loved working,” she said.

Working for the Romanos, cooking and waiting tables, she said, was like “working for Mom and Dad.”

Bonnie Romano said Hale kept at it, even though at the end, working was difficult.

“She came every day,” said Romano. “She’s quite a trooper.”

These days, Hale said her job is to educate herself and others about Alpha-1 and keeping as fit as she can. Allergens in the air don’t allow her to walk the short distance, say, from her home to the store, but she can walk on a treadmill at home, and she does. She says she huffs and puffs, but keeps at it in order to try and keep her muscles strong.

She said another part of her job is to make sure people are aware of the Trek Across Maine, which raises funds for lung health research, education and advocacy work. According to the Maine Lung Association, about 90 percent of the funds raised stay in the community. Hale said there’s a need for organ donors and for plasma, which is used to treat Alpha-1.

To those like her, with lung disease, Hale advises, “Get up and move.”

“Don’t sit down,” said Hale. “You have to be your own advocate with this disease. You’ve got to be on top of it every day. Read about it, and if you’re not on the Internet, pick up the phone.”

Hale said people can reach her by email at hallaval@yahoo.com or call her at 432-0962.

— Senior Staff Writer Tammy Wells can be contacted at 324-4444 or twells@journaltribune.com.