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Don't Give Up
By Khloe Lewis
Hi! My name is Khloe Lewis. I am 11 years old,
but next week I turn 12. I am in the 6th grade,
and my favorite subjects are social studies
and PE—three-pin bowling in gym class is my favorite
game. I like playing with my friends too—sometimes we
just hang out and watch our favorite shows, #1 Carly,
SpongeBob SquarePants, and Zoey 101. Other times, we
go for walks—and we play lots of Double Dutch. We like
to play Wii too. My 5-year-old brother beat me at Wii
boxing, and I didn’t even let him!
My Dreams and Hobbies
When I grow up, I want to be an inventor. I like to think
of new things I could invent, and how I would make
them. I think of new ideas all the time.
I love spending time with my family too. I have six
brothers and sisters. My mom and dad adopted me when
I was two years old, and they adopted all of my brothers
and sisters, too.
For fun, we like to go to the park and play with our
dog, Jetta. She is a German Shepherd. A few years ago,
we went to Disneyland together. That was really fun.
When I was little, I remember that my Nana had
scleroderma. She used to paint a lot, because she loved
art. But my Nana’s hands started to get too stiff, and
her skin got so hard she couldn’t hold her paintbrush
anymore. My mom told me about Nana’s scleroderma,
but I didn’t really know what it was back then.
How It All Started
Then, about a year ago, I was in church with my family.
My mom went to hold my hand, and she noticed that
my skin was hard, just like Nana’s used to be. She
asked me to make a fist, and I couldn’t. My mom took
me to the doctor the very next day. They told me I have
scleroderma too, the systemic kind.
I love my doctors. I am really glad they are helping
me. But it’s hard for me sometimes, because I can’t do
all the things I used to do, like hold a hairbrush. And
I have to take lots of different medicines. Sometimes, I
take almost 10 pills in one day.
I love to play Double Dutch with my best friends and
my sister, Kendall. But sometimes, I can’t do “Criss-Cross Applesauce,” a Double Dutch game I liked to play.
I’m also working on standing on my heels. The doctors
had to give me some casts to help with that. And when I
climb the monkey bars, my hands slip off because I can’t
grab them tight enough.
Having scleroderma is a challenge, but I don’t let it
change my life. My mom says I deal with it “Like water
off a duck’s back.” I’m really open with my friends and
family about it. I do get sad sometimes, but I try not to.
My mom took me to a support group meeting so I could
meet other people with scleroderma. It helped to talk
to other people who have it too, but it’s different for me,
because I’m the only young girl there. But it is helping
me see that I can live with my scleroderma.
The social worker at Primary Children’s Medical
Center in Salt Lake City helped me meet another girl
my age who has scleroderma too. She is 13. We e-mail
each other online. It helps to talk to someone else my
age that is going through the same things I am. Just last
night, my mom took
me to have dinner with
my new friend, and we
talked for two hours.
If I could say
anything to other kids
with scleroderma, it
would be “Don’t give
up.” There are better
things that you can
do—I am proof! |
