A Curious Case(y)

April, 2010 by Ray Bendici
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So I was trolling through the usual curious headlines when I came across this story about Harry Crowther, a British schoolboy afflicted with incurable Atypical Progeria Syndrome, an incredibly rare disease. In essence, the genetic condition causes the 11-year-old boy's body to age five times faster than normal, making him a little old man well before his time. Sadly, children who contract progeria often die fairly young, usually in their early teens. Occasionally, a handful of those afflicted make it in to their 20s, but they almost never make it beyond that. Even worse, the symptoms are physically cruel and incredibly painful. From Wikipedia:
The earliest symptoms include failure to thrive and a localized scleroderma-like skin condition. As a child ages past infancy, additional conditions become apparent. Limited growth, alopecia, and a distinctive appearance (small face and jaw, pinched nose) are all characteristic of progeria. People diagnosed with this disorder usually have small, fragile bodies, like those of elderly people. Later, the condition causes wrinkled skin, atherosclerosis, and cardiovascular problems.
Truly awful for the victim and absolutely heart-wrenching for a parent. I guess the "good" news is that it only strikes one in eight million children. Of course, some of you may think of the Oscar-nominated film The Curious Case of Benjamin Button, originally a short story written by F. Scott Fitzgerald about a boy who is born an old man and ages backward. A thought-provoking piece of fiction. When I read the story of Harry Crowther, however, I immediately thought of a girl who grew up in my hometown of Milford and was afflicted with progeria. Her name was Meg Casey and I used to see her during the late 1970s (yes, I'm that old) in St. Ann's Church in the Devon section of town. I'm not sure of the exact math of it, but I think she was about 8 years older than I was at the time. Of course, she looked much older. I only spoke to her once or twice in passing -- she seemed very friendly -- and I'm ashamed to say that being a young teen at the time, I don't remember anything other than being a bit unsettled by her appearance. I certainly never made fun of her (I understood the sad nature of her affliction) and I remember thinking about how hard her life must've been. Anyway, I did a bit of Googling for Meg, and I found this New York Times article about Dr. Francis S. Collins, one of the doctors who treated her. It's somewhat lengthy and medically heavy, but here's the part about Meg:
''Even before I met her, I was warned that I was getting the celebrity,'' Collins recalled. ''Meg was 23 years old at the time, which meant she was way outside the normal boundaries of survival, with the most undaunted, indomitable personality you can imagine -- and with a sailor's mouth.'' Meg was only about three feet tall and had the flat-chested body of a child, which, Collins said, was one of the things she fretted about the most. She had difficulty walking because, as he put it, her bones had ''just sort of melted away.'' Through a column she wrote for the local newspaper, she was a community activist, pressing for handicapped access to government buildings in her hometown, Milford, Conn. While at Yale, Collins combed the literature obsessively to find something that would help Meg. ''I was determined that I would somehow figure out something that wasn't done properly for her and save the day,'' he told me. But things didn't turn out that way. Collins left Yale to take a job at the University of Michigan in 1984, and Meg got sicker. She died at age 28.
I remember she used to wear a blond wig, and that she had a very high voice. I also recall her column in the old Milford Citizen. I'm glad that she apparently made the most of her short difficult life -- in a way, it seems as though her disease sort of made her a celebrity, for what it was worth. I'm fairly certain I would not have endured such an odd affliction with so much positive energy. Anyway, here's hoping a cure is found soon for this incredibly rare disorder so that young Harry and others can have a full, "normal" life. Oh, and a quick thanks to my mom, who remembered Meg's name and helped fill me in on some of the details.

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Comments

Submitted by caroline (not verified) on
Something brought Meg to mind the other day, I decided to Google her, and found your piece about her. I grew up in Milford, too, and first met Meg when she was a junior at Lauralton Hall and I was a freshman. She was a real ball of fire, known to everyone in the school and in a place full of impressionable teenage girls, a real inspiration- she certainly was to me. During the two years we went to school together it began to dawn on me that Progeria didn't define her, there was so much more to her. It was her personality, her intelligence, her sense of humor and her interest in being a part of things that she wouldn't let her "condition" keep her from that drew people to her. Probably growing up with all those brothers left her with no other choice! When Meg's niece Eileen Casey was paralyzed in a swimming accident it never seemed to dawn on her to change any of the plans she had for herself. How could growing up watching Meg take on the world not have influenced that decision? While I only knew her casually and when I'd say hi to her around town she probably didn't remember me from our days at Lauralton , it was really neat to see her become so well known. I saw her once on the Phil Donahue show when I was visiting relatives and I yelled, "Hey, I know her!" It was really inspiring to see how she'd dedicated her life to bringing progeria out of the shadows and open up fuller lives for all the other kids who'd never seen someone else who looked like them. Now they knew they weren't alone, they had hope, they had options, and they had an example for what was possible. Meg did that for them. She did it for alot of the rest of us too.

Submitted by Lylah (not verified) on
I lived in Devon as a child and remember Meg Casey. I've wondered what happened to her over the years. Sorry to hear she died young, although I figured that was probably the inevitable outcome.

Submitted by TJ Casey, Sr. (not verified) on
It was by accident I read this piece on Meg, my sister. She was a great lady. A doer i.e. writer, painter, community activist. I don't know anyone who didn't admire her spirit. Her illness never got her down. She was the youngest of seven (six older brothers). She died in May 1985 at the age of 29.

Submitted by TJ Casey, Sr. (not verified) on
FYI- Margaret Mary Fagan Casey, our mother, was born on September 14, 1915. Thanks for the memories.

Submitted by Joanie Bakunas (not verified) on
Three women inspired my life; my mother; Margaret Fagan Casey; and Margaret Mary (Meg) Casey. Many of the fondest memories of my teenage and young adult years included Meg and many of her large and extended family. I recently read a quote that said something like "No one, not even poets, have measured the amount of love the human heart can hold". Meg's heart was enormous. Her passing still hurts. What a gift to know her.

Thank you for the interesting article. I am Harry's mum the boy in question and Harry will be 13 in February 2012 and is doing well despite his difficulties associated with his Progeria. So nice to read about Meg also. Love and best wishes to her family.

Submitted by Vera Nespoli Ev... (not verified) on
I want everyone to know what a wonderful person Meg Casey was. I am looking at her picture and a pencil drawing she did for me. I worked for Dr. David Fass DDS in Fairfield, CT and I knew her and her mother well. I remember Dr. Fass ordering special tiny instruments just for Meg so he could work in her mouth. I will always remember her smile and laughter.

Submitted by Judy Thacker (not verified) on
I read an article about Meg in 1983. I saved it as she inspired me. I found it today in some old papers and wondered about her. I was saddened to see she passed away a few years after the article was written. She will always be an inspiration to me.....Never let the things in life stop your dreams. Rest in peace Meg, you are an angel with wings now !