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My parents said I was going to the doctor this one day in fifth grade and it turned
out, like I had no idea that it was going to be like a two-, a three-hour appointment,
and they just dropped the bomb on me and said I had NF.
And I just found out when I was twelve years old that I have two tumors in my neck, but
I've known all my life that I have café-au-lait spots like this one here, and I have like
a big one that smiles on one of my legs. Yeah, me, I think I've always known; but I
think, I just truly understood it when I was at nine or ten years old because before I
didn't really care about it. Same here--I've know it like all my life because
I would go to the doctor a lot, so I pretty much understood what was going on.
My parents didn't tell me about it, I just sort of found out about it on my own because
I found, like, a little like information pamphlet about it, and then I just asked my parents
about it and they told me then. Yeah I do have tumors in my body, yeah I do
have seizures, I could die one day--you never know.
Narrator: For children born with NF summer can be lonely and isolated. I'm John Stossel.
I want to tell you about a special place where children who were afraid that they could never
be like other children suddenly find the world is not such a lonely place.
I was excited to meet, like, new people and make new friends.
I don't know--I love how you can actually meet someone with your medical disorder and
you can kind of relate to them. You know what they're going through and they're
probably going through the same thing that you're going through--it's just fun.
It is my second year hear at Camp K. It's been a lot of fun; like we did a lot
of great things and I met, like, new people and made great friends.
It's fun. You get to do all this stuff like meet new friends, like have fun a lot, go
horseback riding. It's been an experience that I'll probably
never forget. Narrator: When they arrive at camp a new world
opens as they find they can--some for the first time--talk freely about NF, share their
experiences, and have the same fun as other kids without fear of ridicule and misunderstanding.
You connect, you could have someone to talk to, someone who could be there for you and
with NF problems. I think a lot of people don't realize that
such a thing exists. In my hometown there's no kids there that
have NF that I know of--there might be in [other town], but I'm like the only kid in
the whole town that has NF. It's probably, a lot of the kids it's their
firs time meeting people with NF too. Definitely during the week they all start opening up,
getting crazy, having fun, having water fights, you know: "sign my shirt," "will you sign
mine?" "Let's put makeup on." You know they open up because they see other people there
with their disorder and they understand. Narrator: NF is a genetic disorder that affects
one in 4,000 children. It's more prevalent than Cystic Fibrosis, Duchenne Muscular Dystrophy,
and Huntington's Disease combined, and for many of the children with NF camp is the first
time they get to meet and spend time with other kids with the same disorder.
Here, I like the canoe trip, and, like, the trip where we go to a mountain and do stuff
there. When I came here it was really kind of life-changing
to actually talk about it openly with people. Just, getting to know other people with NF
because you can relate to them a lot and other than that it's just a lot of fun.
It's kind of, like, fun because, you know, you get to go camp, like, do stuff you never
get to do, like go horseback riding, canoeing, that stuff.
West side! East side! I like going to the water park and I love
doing the high ropes course--that was a lot of fun; it was a challenge.
Rider: What is your name? Leader: Joe
Rider: Joe! It was good to know other people and to get
to do like once-in-a-lifetime stuff. Narrator: rappelling, horseback riding, the
University of Utah hosts a "Day at the Lab" session--lets the kids meet leading NF researchers
and all the children are encouraged to ask questions.
Doctor: it couldn't cause Eczema; however, sometimes you can get some rough skin that's
colored dark brown that a doctor might call Eczema.
Narrator: NF Camp is about to celebrate its tenth year. It continues to be an opportunity
for teens with NF to come together and create a strong foundation of learning and achieving--a
foundation that they'll carry with them throughout their lives. WIth you support, the Children's
Tumor Foundation will continue to provide this life-changing experience. You can see
that the kids think it's worth it--I hope you will too.
Well, let's just say last year when I came back from camp I told my father immediately
that I was going again next year because it was just so special to me.
I just want to say thank you for letting me come because it gives me a chance to meet
you guys and meet other people, so thank you. A lot of kids, they look forward to this day
every year, the whole year round they just wait for this week.