Monday, November 01, 2004
A Time to Live: A Boy Embraces Life as a Rare Disease Hastens His Aging
At 10, he has the wrinkled skin, aching joints and hardened arteries of an 80-year-old man. Born with progeria, a rare disease that causes premature aging, he is getting older at a rate eight to 10 times faster than the rest of us.
"Like dog years," he likes to say.
Progeria, first described in 1886, has long baffled researchers. Since its identification, there have been only about 100 documented cases in the world, making it exceedingly difficult to study.
...
Most of the time, Seth doesn't think about getting old. He has more important things on his mind, like scheming to get a dog, or earning money for new electronic gadgets. ...
But sometimes the specter of getting old intrudes on his world. He reads food labels for cholesterol content. He takes an aspirin a day for his heart.
And he can tell you the signs for stroke. He knows because his fingers went numb at school one day in the fifth grade. His speech slurred, the likely consequence of a TIA -- transient ischemic attack -- or stroke-like event caused by a blocked blood vessel.
...
Although he does what he can, weighing 27 pounds and barely coming up belt-high to his classmates dictate certain realities. He power lifts a broomstick while the other kids do weights in phys-ed class. ("I have the body of a 70-year-old and look what I can do!")
...
[His father] Kyle, a steady, soft-spoken man, most comfortable in the woods or on a river, moved quickly through his own shock to action. He took his son with him wherever he could, spending long weekend days on the river with him, teaching him a woodsman's skills.
"I try to have the most fun I can with the time we do have," he says. "It still doesn't feel like we have enough time."
...
My house in heaven has got lots of rooms for people, and some for pets. And it has a zero-gravity room," he says.
"You go hunting for gummy bears and chocolate rabbits. And when you fish, you're guaranteed three a day."
At 10, he has the wrinkled skin, aching joints and hardened arteries of an 80-year-old man. Born with progeria, a rare disease that causes premature aging, he is getting older at a rate eight to 10 times faster than the rest of us.
"Like dog years," he likes to say.
Progeria, first described in 1886, has long baffled researchers. Since its identification, there have been only about 100 documented cases in the world, making it exceedingly difficult to study.
...
Most of the time, Seth doesn't think about getting old. He has more important things on his mind, like scheming to get a dog, or earning money for new electronic gadgets. ...
But sometimes the specter of getting old intrudes on his world. He reads food labels for cholesterol content. He takes an aspirin a day for his heart.
And he can tell you the signs for stroke. He knows because his fingers went numb at school one day in the fifth grade. His speech slurred, the likely consequence of a TIA -- transient ischemic attack -- or stroke-like event caused by a blocked blood vessel.
...
Although he does what he can, weighing 27 pounds and barely coming up belt-high to his classmates dictate certain realities. He power lifts a broomstick while the other kids do weights in phys-ed class. ("I have the body of a 70-year-old and look what I can do!")
...
[His father] Kyle, a steady, soft-spoken man, most comfortable in the woods or on a river, moved quickly through his own shock to action. He took his son with him wherever he could, spending long weekend days on the river with him, teaching him a woodsman's skills.
"I try to have the most fun I can with the time we do have," he says. "It still doesn't feel like we have enough time."
...
My house in heaven has got lots of rooms for people, and some for pets. And it has a zero-gravity room," he says.
"You go hunting for gummy bears and chocolate rabbits. And when you fish, you're guaranteed three a day."
Comments:
Post a Comment
| Get a hit counter here. |
