3/13/03. Samantha Myers is a fourteen year old girl. She lives with her parents and her dog, Smokey. She has a rare Jewish genetic disorder called Familial Disautonomia. It affects the motor system and she has trouble swallowing. She has a button in her stomach; she gets fluids in this manner. A syringe is put into the top of the button and the plunger pushes the fluid into her stomach. She has gone on national television and explained what F.D. is. She also raises money for the F.D. foundation, to find a cure. I am Samantha's friend and I interviewed her when she was 14 and I was 13 years old, in 2003.
My name is Samantha Myers. I’m fourteen. I go to Winston Prep on 36th and Central Park West. I love my school because everyone is really nice there and the only thing I don’t like is gym and Soc. Com., which is social communications. It is something new for this school. I like to go to the movies, I like to have friends over, I like to have sleepovers or just hang out or watch TV. And talk on the phone.
I like to watch Lizzie Maguire, Boy Meets World, Even Stevens, So Little Time, and Two of a Kind with the Olsen twins. I like them because they are cool and they seem really nice, and they seem like normal people even though they have a lot of money. I like those shows because they are funny and they are really fun to watch with my parents. Um. . .well their old show, kinda relates to real life but their new show is about how they live in a fancy mansion in Malibu, California and their parents are fashion designers and..., but in their old show, Two of a Kind, it had.. .they’re more my age and.. .and I could deal more with them then. I like their show because it just.. .cause the actors are really funny, especially the babysitter, the babysitter is really funny. I think shows, shows with kids with disabilities are really good, but they don’t have a lot of shows like that. That’s the only thing I don’t like about TV. Well, their new show, So Little Time, they have a kid who was in a wheel chair and that was the only show where they had a kid with a disability on it and I really liked that episode, it was good. I liked that episode in particular because. uh... because they had a kid with a disorder on the show, which they really do and that was the only time they had one and I thought that was really good.
Well, that kid was in a wheelchair and
sometimes I need to be in a wheelchair like going from.. .like going on long
distance or something because my blood pressure could be wobbly and I could
feel faint or something and I need my wheelchair so that’s how it would relate to me. Well, because I have a
rare disorder called Familial Disautonomia and um. . .it only affects 300
Jewish kids, it’s a rare disorder and um.. .what happens is I can’t eat or
drink some stuff and um...I’ve lived with it for 14 years and I’m used to it
even though I hate it. I hate that I can’t eat or drink a lot of stuff that
other kids can... milk, juice, hot chocolate, urn..., carrots, ah. . .like
regular food but I can have a lot of foods like hamburgers, fries, and stuff
like that. I’m not complaining, I’m just saying it’s really hard living with
F.D. I have to do a lot of stuff--and I can do a lot of things--which is
annoying but I have to do it anyway, like I have to do physical therapy on
Mondays, Thursdays I have occupational therapy, and um... I’m going to sleep away camp for the
first time this year. Um.. .it’s called Camp
Simcha. It’s a very Orthodox Jewish camp and me and my friend Jaime Goldblatt are applying to it and we, urn.. .we really wanna go, that way we know each other and we can hang out together if we don’t know anyone else.
I try to ignore F.D. but sometimes I have to
have certain medicines or fluids during the day and I try to ignore it but I
know I can’t because it happens and, so, that’s the way it is, I’m not that
upset about it. I don’t take things for granted and I think like anyone else. I
think since it’s a rare disorder, I think people should know a lot about F.D.,
and find out more information about it, I think it would help That way they
would know more about it and um.. if people ask them they would know right
away, they wouldn’t have to ask
anyone else, they would just know the answer. Um... I do think this is
important, if kids want to learn more about it they should ask more questions
about it and um... they could ask anyone they know if they have F.D. they could
ask what they can or cannot do, and its fine I mean no one will get mad or
anything, its just a question. Well, I would just tell them about it, I know
that they might not know about it but I think that they should know and I
wouldn’t be afraid to tell
them. I think they would understand more about it and that way they wouldn’t
have to ask as many questions, they will just know automatically. I’m just a
normal person, I mean, I have to go
to school everyday, I have to do my homework, and I have to do everything like
a normal kid like chores, like clean my room, like walk my dog, like clear my
dish from the table, and turn off the TV when my parents say so. I wish that a
lot, I always wish that I didn’t have F.D. because sometimes its just too...
its too hard like I have to have
so many medical things done.. .done. . .happen to mc during the day and its
really annoying but I try really hard not to let it bother me.
I think if I didn’t have it I would think of stuff I can have and could drink but scientists are working on researches and they haven’t found a cure yet but everything is going really well. Well, I think I could help by doing more volunteer work for F.D. and umm... I actually entered this contest last summer called Lizzie Adventure All-star Contest and um.. .well the first prize is you get to work on a volunteer project with the cast of Lizzie Maguire from Disney channel, but if they don’t have anything planned I would like them to come down here and do a fundraiser for F.D. that way people could meet them and I would raise money for F.D. Well, I think I might, I don’t know I think I did all I can and I don’t know if I can do anything else. Well I have gone on national television and told everyone about it and um.. .l’ve gone on CNN, I’ve gone on Nick News, which is a kids news show, I’ve done a lot of public speaking like at the Make-a- wish ball, and the Lower East Side Girls Club, and um... when I met the president of Egypt’s wife, Mrs. Mubarak, that was really cool.
Well... I like, I like to continue to raise money for F.D. that way we could find a cure sooner and more easier ways to do life. Well, um... for my bat mitzvah I decide to dedicate my bat mitzvah to raising money for F.D. and I raised, I think over $10,000 and I’m really proud of myself for doing that Well, um.. .1 have a friend named Jaime and she has F.D. too, but she wasn’t diagnosed with it ‘till a couple years ago so she’s.. .so. . .her parents didn’t know that she had it, but um.. .they found out pretty recently and so um... and we’re really good friends. Um.. .well I think it makes us a little bit closer because I have a friend who I can relate to and we have a lot in common and um...we can both talk about how it bugs us and stuff, F.D. and how it’s annoying.
Well I have a really really good friend named Amanda Gross and she doesn’t have F.D. but we’re just really good friends, we have play dates, sleepovers, and actually on Saturday I’m going to hang out with her, we’re going um.. .I’m going to see her, I’m going to go to her father’s wedding. Well, we play with my toys, we watch TV, and um.. .we go to the movies, and just hang out or go to playroom and stuff. She doesn’t really care, I mean just as long as we’re good friends it doesn’t bother her, I mean, its not contagious or anything, she can’t catch it, but she has been really helpful with it. When she came to my batmitzvah she knew how hard it was to me, she knew that it was difficult for me to raise all that money by myself so she donated, she and her family donated to F.D. and that helped a lot She treats me just like any other kid I mean, even though I have F.D. she doesn’t treat me any differently, she treats me just like a regular kid.
Well, my parents know how hard it is for me, but um. . .they think that I’m just a regular kid even if I have F.D. I mean, I complain about doing stuff, and I do my homework, having dinner with them, and um. . .and just having friends over, they think I’m a regular kid which I am. Um... well I need to have a lot of fluid during the day and at night. I’m on this thing called the pump which gives me milk during the night cause I can’t have milk cause it could get in to my lungs and make me really sick, but I also have to have some medicine through a tube and I have to have my health aids with me, during the day, which is great cause they’re really nice and they know all about it and um... they, I don’t know I’m just, it doesn’t really affect me.
Well, my health aids are great, I mean they.. .my health aid, her name is Soroya Wallace and she has been with me for about seven or eight years and I have another health aid named Rachel Isenberg, she’s been with me about a month and she’s great, I mean she’s really nice because we both.. .like the same show called Friends and she is just really nice cause we have a lot in common and stuff like that, everything is fine with us.
Well I have a syringe and a plunger and I have a really skinny tube because I have a button in my stomach and they just put the tube in my button and they [Soroya and Rachel] just give me fluids during classes. I feel great about it because a lot of the kids in my class like them a lot, they really like them, and we.. .and they and um. . .they play games and they play games with us, and they play Guess Who and um.. .they just love hanging out with us, it’s a lot of fun. Well, my feelings are fine I mean I really don’t mind having a health aid with me cause that way if someone is bugging me I can always go to my health aid instead of the deans which is a lot easier because, cause they’ll just tell the deans for me instead of me going to the deans I really don’t mind.
I go to a private school that has really small classes and um. . .urn. . .well my parents think that I need help in math, and um.. .that way it’s not a big class, it’s only about 10 or 11 kids, so it’s small. The teacher is really nice and all and the whole class is really nice. Um... all kinds of kids, some kids might have dyslexia, some kids might have trouble in math, history, English, anything and this school would help. I’d say it’s a school for all kinds of Iearning disabilities. I mean it’s a great school, it goes all the way up to high school and you don’t have to change schools.
Well, she [Arnanda] has dyslexia, and she’s
actually going to the school next year, but I’ll be in high school when she’s
in 7 grade so we won’t be able to see each other a lot. She’s twelve. It’s
great living at home. My parents are really nice, I love them a lot, my dog is
nice, it’s a west highland terrier, her name is Smokey, I’ve had her since I
was 8 years old, so I’ve had her for 6 years, and she’s really great dog except
when she barks and um.. .it drives me crazy when I’m trying to do my homework,
so.. .but other that that she’s a great dog to have. Well, I wasn’t allowed to
eat when I was really little, I couldn’t swallow food, and so my mom and I made
a deal, she said if I could eat a whole sandwich in one day I could get a dog.
So, a couple of years ago I was at my country house, in Conrak and I um... I
was eating a peanut butter and jelly sandwich for dinner, on chalah bread and I
actually finished the entire sandwich, and I’m like “Mommy, mommy do I get a
dog?” and she’s like, “Yes,” and I’m like “Do I ever have to eat a sandwich
again?” and I actually love eating tuna fish sandwiches and grilled cheese
sandwiches, so I love sandwiches. I eat a ton of it; I don’t know how much, I
just eat a ton. Well, I like. . .1 really, really love her because sometimes
she climbs in my bed and she keeps my feet warm and sometimes she just likes to
be petted like on her belly and is spoiled and anything and well I don’t know,
I just love her so much, she’s so fun.
I think one word that describes me is fabulous, meaning all the stuff that I have to go through and my personality and everything. I just feel very fabulous because my parents say that about me, I feel really good about myself. I think I consider myself very lucky because even though I have this disorder, I’m still a regular kid I mean nothing unusual, I feel great about myself, even though I have it I still feel great. Well, at home I feel lucky because my parents are great, and um... I love having people over and um. . .1 just love hanging out at home and stuff, and I have a lot of friends. You’re welcome, bye!