BOSTON -- Muscular dystrophy comes in many forms and can strike at any age. The Henry family, of Shrewsbury, learned this frightening lesson last year when daughter, Nicole, was diagnosed with limb girdle muscular dystrophy.

"My name's Nicole Henry, and I am 14 years old, and I was diagnosed with muscular dystrophy last spring," Nicole said.

"Nicole is your typical 14-year-old girl. She's No. 3 of four daughters, and she was diagnosed about a year and a half ago with limb girdle muscular dystrophy. And it was a shock to all of us, especially Nicole," Nicole's mother, Diane Henry, said.

Limb girdle muscular dystrophy isn't really one disease. It's a group of disorders affecting voluntary muscles, mainly those around the hips and shoulders. Nicole's parents became concerned when she didn't "outgrow" walking on her tiptoes.

"She was always a toe walker, and we never thought much of it because every time we'd go to the doctor they'd say, 'she'll grow out of it. She'll grow out of it,' so we started not even worrying about it," Nicole's father, Ronald Henry, said.

"The muscle breakdown or weakness, if you will, will eventually land Nicole in a wheelchair," Diane Henry said.

Shortly after Nicole's diagnosis, the Muscular Dystrophy Association came into the family's life.

"And with MDA and the people associated with MDA and the contributions, we wouldn't be able to focus on just dealing with, you know, keeping Nicole happy and healthy. If we didn't have such a wonderful organization behind us," Diane Henry said.

Nicole and her mom have been giving back by acting as Goodwill Ambassadors, attending events to tell people about MDA.

"And I thought it would be a great idea for her to be as involved as possible with the MDA, and right away it was within a couple of months, a few months, that Mary had asked Nicole to be the Goodwill Ambassador for Central Massachusetts," Diane Henry said.

There have been scientific advances that are leading to more hope than ever. In the July MDA-supported study, experiments conducted in mice have suggested that in some forms of limb girdle, gene therapy has the potential for safety and efficacy in humans. But until there is a cure, the family keeps it all in perspective.

"I would love, of course I would love to see a cure for this and that would be the ideal. But I would love to see her to be able to get through high school and not have to be in a wheelchair," Ronald Henry said.

"What I've been trying to teach Nicole is that you have this disease, it doesn't have you," Diane Henry said.