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.
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.