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rktMaking Sick Children's Wishes Come True
Jason DeRusha
Reporting
(WCCO) Waconia, Minn. On the court at Waconia High School, John Kalthoff looks like any other freshman basketball player.
But on the inside, the 14-year-old has an incurable disease with a scary name: neurofibromatosis.
"It's a disease where you can grow tumors in your body anywhere you have a nerve, which is pretty much everywhere," said his mother, Barb.
"I don't feel them at all, unless I touch them," John said.
So this wannabe hoop star got the chance to make a hoop dream come true.
John has to spend his time on the court with freshman at Waconia High School so when it came time to make a wish, he wanted to see the professionals.
"I couldn't believe it at first when they said we're going to send you to the (NBA) All-Star game," John said.
The All-Star wish is right on John's very own Christmas tree in the Mall of America's Camp Snoopy.
He's one of 50 special kids with 50 important wishes.
"Sometimes this is the light at the end of the tunnel for them," said Tom McKinney, Make-A-Wish Minnesota's Executive Director. "If they can make it through the treatment, they get a trip someplace or they get to meet somebody."
On Friday night, Make-A-Wish kicked off their Stories of Light campaign. From 4-year-olds who want to go to Disney World to a 14-year-old who may be biggest All Star at that game in February.
"I'm just counting the days until I go," John said. "I can't wait."
John is actually doing pretty well. He has a couple tumors inside him right now, but they're not cancerous. The danger is if a tumor pops up in the throat or on the brain.
He goes to Washington D.C. to the National Institutes of Health for treatment, so he's got the best doctors in the country working on his care.
http://wcco.com/local/local_story_337164621.html
this whole "incurable disease" thing has always struck me as odd. i'd say more "condition" than disease. but then denial is my own best worst enemy.
i never got a trip to anywhere. which is fine. but if he's able to go to d.c. from minneesota for treatment, does he really need the make a wish foundation? (especially since the mayo clinic is a car-drive away.)
there was supposed to be more writing here, but i changed my mind. and i have a headache that thinks it wants to keep brewing.
Jason DeRusha
Reporting
(WCCO) Waconia, Minn. On the court at Waconia High School, John Kalthoff looks like any other freshman basketball player.
But on the inside, the 14-year-old has an incurable disease with a scary name: neurofibromatosis.
"It's a disease where you can grow tumors in your body anywhere you have a nerve, which is pretty much everywhere," said his mother, Barb.
"I don't feel them at all, unless I touch them," John said.
So this wannabe hoop star got the chance to make a hoop dream come true.
John has to spend his time on the court with freshman at Waconia High School so when it came time to make a wish, he wanted to see the professionals.
"I couldn't believe it at first when they said we're going to send you to the (NBA) All-Star game," John said.
The All-Star wish is right on John's very own Christmas tree in the Mall of America's Camp Snoopy.
He's one of 50 special kids with 50 important wishes.
"Sometimes this is the light at the end of the tunnel for them," said Tom McKinney, Make-A-Wish Minnesota's Executive Director. "If they can make it through the treatment, they get a trip someplace or they get to meet somebody."
On Friday night, Make-A-Wish kicked off their Stories of Light campaign. From 4-year-olds who want to go to Disney World to a 14-year-old who may be biggest All Star at that game in February.
"I'm just counting the days until I go," John said. "I can't wait."
John is actually doing pretty well. He has a couple tumors inside him right now, but they're not cancerous. The danger is if a tumor pops up in the throat or on the brain.
He goes to Washington D.C. to the National Institutes of Health for treatment, so he's got the best doctors in the country working on his care.
http://wcco.com/local/local_story_337164621.html
this whole "incurable disease" thing has always struck me as odd. i'd say more "condition" than disease. but then denial is my own best worst enemy.
i never got a trip to anywhere. which is fine. but if he's able to go to d.c. from minneesota for treatment, does he really need the make a wish foundation? (especially since the mayo clinic is a car-drive away.)
there was supposed to be more writing here, but i changed my mind. and i have a headache that thinks it wants to keep brewing.
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no subject
Date: 2005-12-06 03:17 pm (UTC)So neurofibromatosis isn't a disease. It's an underlying condition that can cause tumors of nerve fibers. The tumors are a) secondary (a result of the nfm, not the cause and not the only symptom) and b) "curable" in that way that tumors are curable - removable, controllable, etc. Are the tumors a disease? No, they're tumors, until they turn cancerous, but as my friend Warren shows, you can have the tumors for years and years and years and years before that happens. Cancer is a disease, of sorts, but even then it's borderline. Definatly an illness, but disease?
Incurable, hmmm. Very little in this world is curable, per the modern definition of the cure. This is where my dissertation is heading, the discourse over cures and the "incurable". Asthma is incurable, too, but the Make a Wish foundation never sent me to basketball camp (though the underlying condition of asthma would have manifested itself through the basketball, I'm sure, cause thats how I got out of everything but the easiest of sports in high school gym). Most conditions like nfm, asthma, autism, sickle cell, etc, that are embodied from within the body confined to the body are "incurable" but "treatable". Treatments are different from cures, but people get the two confused all the time.
But they're selling something. They are selling sympathy. They want your money. They want you to consume the story and pay them for the misery. At least with nfm (and asthma, lupus, etc) there are serious health risks. But what gets me is the same language that is used for mental and cognative-neurologic "illnesses" "disabilities" and "disorders". They use the same damn language for autism, and I've never heard anyone dying of autism.
I don't think you're in denial. I think you're probably pretty rational about it. Warren never said he was sick, or had an "incurable disease", or even though of himself as being an ill person until it went cancerous. And because he's responding really well to treatment, he's stopped even thinking of himself as having a dangerous condition, despite the location of the tumor just of the brain stem. It's almost like an inflated asthma attack of sorts. Inevitable, but treatable and survivable. Viewing yourself as having a disease allows the medical gaze to control far more of your identity that you proabably want them to have, despite the reliance upon medicine as an institution for health.