Oldest Survivor of Rare Aging Disease : Meg Casey, 29, Dies After an Eloquent Struggle

The 29-year-old victim of a rare aging disease, who led the longest and certainly the most eloquent struggle against her preordained early demise, has died in New Haven, Conn.

At her death Sunday Margaret (Meg) Casey was believed to have been the oldest surviving victim of Hutchison-Gilford progeria syndrome, a genetic disorder that stunts growth, disintegrates bones, causes hair to fall out and prematurely ages those it strikes.

Her death followed by six weeks that of Alicia Gowans, a 15-year-old San Jose girl Miss Casey had met on a tour of Disneyland in 1981.

Unlike younger progeria sufferers, Miss Casey was able to wage an articulate battle against her illness. Fully grown she was 3 1/2 feet tall and weighed less than 40 pounds. But her stature was far greater.

She wrote a column for her local newspaper on the problems of the handicapped and served on a commission on the disabled in Milford, Conn.

Hundreds of Letters

When her story appeared in Reader’s Digest, she received hundreds of encouraging letters from around the world. President Reagan wrote to her in 1981 saying: “You are very special, Meg. Your family and friends love and admire you and you bring out awe in all you know.”

Shy she was not, either at earning a living as a free-lance artist, or as a spokesman for the handicapped.

She told the New Haven (Conn.) Register recently that she felt obligated to speak out for younger progeria victims.

“Being the oldest puts an obligation on you to be the spokesperson. I’m the only one. . . . All the rest are children.”

That she survived childhood at all was a monument to her feisty nature.

She wore a blonde shoulder-length wig that featured bangs and said her only regret was that she never had a sex life “all because of what someone else’s idea of what pretty is. It hurts, not being a contender.”

She added that she “wouldn’t mind being different for one wild weekend a year. No, make that a month. . . .”

Impulsive Trip

But her complaints were minimal and generally centered around the way the world treated her fellow handicapped people.

She impulsively jumped aboard an airplane at midnight in December, 1981, after reading newspaper accounts of Alicia Gowans and two other fellow progeriacs on a tour of Disneyland. She flew to Anaheim because of what she said was the “callous and humiliating” treatment the three young children were getting from the media. She also said she wanted those children to see an adult victim of the ravaging illness they shared so that they could know “that you can get older. That you can take care of yourself.”

And she did care for herself, maintaining a house that was designed around her physical limitations. She even had tried to get a driver’s license.

Miss Casey credited her parents with her independence, telling The Times in 1981 that they had refused to coddle her. She played sports with her six brothers although the family dressed her like a miniature doll in lace and satin and the nuns at her elementary school called her their “littlest angel.”

‘Just Gorgeous’

“As a child I thought I was just gorgeous,” she recalled. “At 5 being different isn’t a stigma. It’s wonderful.”

She was not told of her illness until she was in her teens, when her mother told her that doctors had predicted that she probably would not live past 16 and then revised their forecast to 21.

“Every time, I outlived the deadline,” she said.

Why?

“A helluva lot of it is that I didn’t know I couldn’t.”