News of her death on May 26, 1985 brought national headlines.
“Oldest Survivor of Rare Aging Disease: Meg Casey, 29, Dies After an Eloquent 

Struggle,” proclaimed the Los Angeles Times. 

“Oldest Progeria Survivor Dies at 29 in Connecticut,” said the Orlando Sentinel. 

Two years before, she did not escape the notice of President Ronald Reagan after he read “The Courage of Meg Casey” in Reader’s Digest, reprinted from the Hartford Courant. 

“Meg, Mrs. Reagan and I want you to know that your courage and acceptance of your health problems give others hope that life can always be rich and rewarding,” the president wrote on June 22, 1983. “It is how we go forward and love each day that really counts.” 

Margaret Mary (Meg) Casey, who weighed 40 pounds, was 40 inches tall, and wore a blonde wig, led a nearly normal life despite having progeria, a rare genetic disorder that stunts growth, disintegrates bones, and dissolves body fat, muscle and hair. 

Victims of the disease usually die before adolescence, but Casey’s parents were determined to treat her as they had treated her six older brothers. She played sports with her brothers although the family dressed her like a miniature doll in lace and satin and the nuns at St. Ann Elementary School called her their “littlest angel.” She later graduated from Lauralton Hall where her mother went. 

She wrote a column for the former Milford Citizen on the problems of the handicapped and helped form Milford Independent Disabled Persons. Through the efforts of MIDP all city buildings became handicapped accessible. The city also installed curb cuts on every street and a handicapped access ramp at Walnut Beach next to Meg Casey Pavilion. 

The first 10 years of the Milford Oyster Festival, from 1975 to 1984, she designed the T- shirts. From 1982 to 1985 she wrote a handicapped issues column in the Milford Citizen entitled “Most Able Disabled.” 

“Call her a Renaissance Woman,” her brother TJ Casey said of her writing and artistic skills. “She was in an area where she was loved and supported by friends and family. If she wanted to try something, we’d let her, and she succeeded most of the time.” 

On a moment’s notice in 1981 Meg flew to Disneyland to speak up for some progeria pre-teens after seeing on the news how the press negatively treated them as oddities while on their trip supported by the Sunshine Foundation. 

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

“A lot of families and doctors have sheltered progeria victims,” she added. “They’re afraid of the public, afraid of the comments. Some of these children were eight years old and had never been in the company of anyone but their family.” 

Progeria was named by Hastings Gilford, a British surgeon who had a fondness for conditions in which the body’s clock and the clock of nature did not quite correspond. In 1897, he published the case studies of four children –two with what he called “continuous youth” and two with “premature old age.” To the condition of perpetual childhood, in which children failed to grow or to go through puberty, he gave the medical name “ateliosis,” Greek for “not arrived at perfection.” For asynchrony at the other end of life, he gave the name progeria, Greek for “prematurely old.” 

Upon moving out when she became an adult, a family cottage at Cedar Beach was rebuilt with lower windows and kitchen counters set at a height for her to reach everything. Judy Schubert, her roommate for five years, helped her with some tasks she had difficulty with such as shopping because she didn’t have a vehicle outfitted with special controls. 

“Meg was just a kind of damn the torpedoes, full speed ahead,” Schubert said. “She loved going to parties and going out with friends. She just lived a full life.” 

Meg was admitted to Yale-NewHaven Hospital late Saturday of Memorial Day Weekend after dancing for two hours at TJ’s 10th wedding anniversary party. A stubborn foot infection had flared up, and she was having trouble breathing. She died 12 hours later. 

For her funeral psalm she had written: “I’m not sorry for myself; it wouldn’t do me any good if I were. I’ve had a happier and fuller life than many ‘normal’ people, and it’s alright to strive for dreams; that I can do anything if I set my mind to it. If you must bury something, let it be my thoughts, my weaknesses, my prejudices. I promise that then I will live forever.” 

For more information on Meg Casey, go to http://mostabledisabled.com/ by Daniel Ortoleva.