FD Familial Dysautonomia

Sam in the New York Times!

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DISNEY CHANNEL; Another Minority

Published: June 22, 2003

To the Editor:

I was really glad
to read your article about how the Disney Channel has developed
successful shows with minority characters [”At the Disney Channel,
It’s a Diverse World After All” by Marc Weingarten, May 25]. Disney
has also been one of the best kid’s channels at making great stories
with believable characters who have different kinds of disabilities.
Its made-for-TV movies, like ”Tru Confessions” (about a teenager with
a developmental disability and his twin sister) and ”Most Valuable
Primate” (about a deaf girl who befriends a chimp), are almost the
only shows on television where you can see what its like for those of
us who are part of another important minority.

SAMANTHA MYERS
Manhattan

The
writer, who is 14, has the genetic disorder familial dysautonomia.

Family and friends

Picnic at the park

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We went on a picnic yesterday with Alla and Lily. We went to Rockefeller Park north of Battery Park. I had never been there before. It was near the water. The park was so beautiful.  I could see all these amazing buildings. I took a lot of pictures of everything: trees, people, buildings, and all kinds of stuff.There were so many people there. They were tanning.  I had a peanut butter and jelly sandwich. Alla had a banana and Lily had an apple.We walked there with my wheelchair, and we took a taxi home because it was so hot.

Telephones

Walkie Talkie

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BKG: I noticed you were talking on the walkie talkie with your Dad and he was just in the next room! How did the walkie talkie business start?
SM: I was watching The Suite Life of Zac and Cody on the Disney Channel and I saw them using walkie talkie. I thought they were cool and I wanted a set.
BKG: So then what happened?
SM: So, when I told my parents that I wanted one, they said no because there were already two pairs in the house. So I didn’t bug my parents any more about it.
BKG: Do you ever use the walkie talkie?
SM: Yes, for fun, with my friends and my Dad.

Telephones

Barbara talks with Sam about the red lips phone

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BKG: Sam, how come the red lips phone is back in action?
SM: Because I just felt like a change.
BKG: What was the phone before?
SM: It was my big white cordless. I like the shape, the design.
BKG: What do you like about the lips?
SM: The shape. And, I LOVE the color.
BKG: Where did the lips come from?
SM: I got it at Radio Shack. I saw it on Full House, one of my favorite television shows.
BKG: What did you think when you first saw the lips?
SM: I never saw anything like it before. I HAD to have that phone.
BKG: I love that phone too. There is something totally wacked about the idea of lips speaking into lips.
SM: I never thought of it that way before.

School

No homework!

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This week I was out sick for two days from school. I had a 24-hour bug. The good news is that I had no homework this week! Why? In English there was a fire drill. Plus, my teacher was about to hand out the assignment, but I had already done it because my Mom and I had read on ahead; I wanted to find out what happened. The book is Crispin. My history teacher, she was going to make photocopies of our projects. Science, she just didn’t give us any homework. I felt very great about it!

Family and friends

Marina’s dorm

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I went to see Marina’s dorm today. She invited me over to see her dorm. I met her roommate Liana. Liana is very nice. Funny thing: her grandma is best friends with my grandpa, my Mom’s Dad.

Their room is really cool. Marina cleaned it up and it looked really nice. They have fabric all over the place, nice colors. They  have about three closets, a bathroom, and a kitchen, not a big one.
No stuffed animals, but they had pictures of
them with their friends on their desks. We talked about all kinds of stuff, nothing in
particular, just stuff.

Marina gave me this really nice scarf for my birthday. It’s grey with little pink things in it.

I showed Marina my blog. She loved it. She wrote down the URL so she could look at it and make comments.

I don’t know what they are studying. It was just nice to see them.