Jolene Worley, Former Muscular Dystrophy Poster Child, At 41

The phrase has been said a lot. Many times. But isn't it strange how the truth - no matter how many times it is told - never gets old.

Well, here is a phrase - an old, "heard-it-last-year" or 10 years ago phrase - that captures the essence of Jolene Kay Worley: "The good always die young."

It's that simple. She was good. But her life - the one she lived with determination and purpose - was not simple at all. It was complex. Difficult at times. Some might call it hard.

And maybe that's why Jolene Kay Worley, who in 1955 became the first National Muscular Dystrophy Poster Child, will be missed: she took a difficult life filled with unusual circumstances and made it something she and anyone else could be proud of.

"The telephone here hasn't stopped ringing for four days," says Tim Worley, husband of Jolene. "People are just saying, `Why, why Jolene?' She had been such a force. She always had these stories to tell - all these stories of life."

Mrs. Worley was born Dec. 27, 1951, in Seattle to Norman and Esther Lake.

Although she died of pneumonia at the age of 41, Mrs. Worley of Camano Island, who was born with a disease called spinal muscular atrophy, was not expected to live beyond her teens.

"She far surpassed the life expectancy" that was thrust upon her by medical experts, says Carole Miller, patient service coordinator for the Western Washington chapter of the Muscular Dystrophy Association. "Her disease was kind of unusual. Not very many people have it."

For those who do, Mrs. Worley was a "real" example of beating the odds.

Through her, children who were told they could not marry or live in a home could see there was the possibility of living with dignity.

"There are probably 30 children in Western Washington who have her disease," Miller says. "And when these kids are born the parents are afraid they will only live a few months or a few years.

"But Jolene gave these parents a lot of hope. She made them understand that their children could grow up, get married, work and have a beautiful home. There are a lot of people who are grateful for the hope that she gave for their children's future."

Always active in Muscular Dystrophy fund-raising activity, Mrs. Worley was also involved in legislative advocacy for the disabled.

She was a volunteer at Lutheran Daycare Center on Camano Island, and was a board member for the Stanwood Fair and a publicity specialist for the Stanwood Camano Family Center.

Her life of activity inspired others.

But Mrs. Worley also made them understand that it would never be easy; that the leap to some degree of independence from a crippling disease that renders muscle tissue weak and virtually useless is not accomplished overnight.

It was a slow road, they needed to know, and even painful.

"She never walked in her whole life," Miller says. "And for many years she needed help dressing herself.

"Her home is completely wheelchair accessible," Miller says. "It was all light and air and beauty. And I think it is really a reflection of her spirit. She wanted to give her life as much meaning as possible."

Besides her husband of eight years, and her parents, of Port Ludlow, Jefferson County, Mrs. Worley is survived by a stepdaughter, Tina Agnew of Renton; a sister, Linda Richter of Renton, and a brother, Tim Lake of Tacoma.

In accordance with her wishes, there will be a celebration of life at her home at 1 p.m. Saturday (April 24).

Remembrances may be made to the Muscular Dystrophy Association.