If you went
to my school,
you would probably see me zipping around the halls and you would
wonder who I was. Well, wonder no more. I'm here to tell
My name is Margaret Jo Purk. You can call me Margaret or Marg, M.
J., or Margaret Jo, or even Miss Maggie. I have brown hair, hazel
eyes, and pierced ears. I was born on January 8, 1988, my parents
very first child.
When I was
old, my parents found out that I had Spinal Muscular Atrophy.
meant that I would never roll over, crawl, walk, stand, or even sit by
myself. It also meant that I would get sick often, choke
and have trouble eating. The doctors told my parents to take me
and love me since I would die before I was two. Were they ever wrong!
my sister Emma Clare was born. We soon found out that she had
Muscular Atrophy too. Emma and I frequently got sick, but we
attended preschool. When I was three, my mom was killed in a car
while on a lunch break from work. That was on June 4, 1991. My
took off work from A & S to take care of us and so did a lot of my
aunts and uncles. In September of 1991 Brenda came to live with
to take care of Emma and me. That was wonderful. Right before Christmas
of that year, I got a big surprise...my first power wheelchair! Finally
I was able to go wherever I wanted. Yippee!
in my life
didn't end that year, unfortunately. In March 1992, my sister
died during a nap. She had a hard time living because she was always in
the hospital, and that made her sad. I believe that now she is 'free'
run, play, roll down the steps, and walk. Free like she never was
heal the pain
of losing half of my family, we started to travel and visit my aunts
uncles. We went to Ohio, Colorado, Wyoming, and Florida in the next
months. For some odd reason, after Emma's death, I became
and healthier for awhile. I continued to go to school and take
vacations, even making it to Iowa twice.
School for five years. During the second year, my breathing
weaker and I missed a lot of school. In third grade, my
wanted to put a hole in my throat to help me breathe...that's called a
tracheotomy. He wanted me to use a special machine to push oxygen in my
lungs (a ventilator), too. My father said no and so I didn't. What I
do was miss most of third grade because of pneumonia...it just wouldn't
go away. With the help of a new doctor, though, I was
and ready to tackle fourth grade.
grade, and this
time I missed a lot of school, not from pneumonia, but from having an
to have my spine fused. The doctors told me that I needed to have
the spinal fusion, but they warned us that I might die from the
As you can tell, I didn't. I spent only five days in the hospital
after a twelve hour surgery which amazed all my doctors, so much so
one is writing a paper about me. During the surgery, the doctor
a metal rod that goes from my right hip up my spine to my neck and then
back down my spine to my left hip. As a result of the surgery, I
grew to my current height of 5' 4". After surgery I lost a lot of
muscle strength in my arms from nerve damage and had to learn how to
and feed myself all over again. I also began having more problems
with choking and I missed even more school.
much school, I managed to graduate, to have a part in our class play,
to sing a solo in "Romeo and Juliet". I am now in fifth grade and
am awaiting my third power wheelchair. Now being in a wheelchair does
*not* mean I don't have likes and dislikes
like anyone else. Like other kids, I watch TV, play baseball,
to music, read good books, and hang out with my friends. One of
favorite TV shows is Seventh Heaven because I can watch it with my
The show focuses on issues that kids face today. I also like shows that
make me laugh, including: Boy Meets World, Sabrina, The Rosie O'Donnell
Show, and Smart Guy. When not watching TV or doing homework, you can
me listening to country music. I love it because it's not loud and
and because it talks about real life problems.
kids, I collect
Beanie Babies...all types! I have over 300 beanies, and that's only
April, 1996. Most of my beanies have come from writing contests I
have won on-line. I also received over 100 beanies after my spinal
My dad got me hooked on Sasha dolls, and so I've collect three of them,
too. I attended my first Sasha Doll Festival four summers ago. I
love to design clothes for them and then have my father make
I also collect Noah's Arks, angels, and of course Barbie dolls. As you
can see, I am an active person. I am rarely home in the summer
because I travel. During the school year, I kept extra busy
meetings of the two groups I belong too. As a Girl
Scout, I was incredibly active, earning 40 badges in Brownies and 70 as
a Junior Scout (as of 2000). Can you imagine how many I've collected by
the time I finished the Scouts? I've also belonged to WOW (Winners on
Wheels) for a
very long time, a scouting group for boys and girls who use
In middle school, there were many things I like and many
things I dislike about it. I'll start with the bad things to get
them out of the way. First and foremost is the issue of
This school, like many others, does not meet federal laws. There
are no regulation size elevators, accessible bathrooms or drinking
the doors aren't wide enough and they're not automatic; there are
no safe parking spots and no handrails on the ramps...and that's just
beginning. These are all things that I would fix if I were in
I would also make adults take a disability awareness class, so that
would be more aware of the difficulties faced by people who are
parts. The teachers were
wonderful and were quite aware of my differences and how they do and
my learning. I also had many great friends. I have one
good friend who I can share secrets with, knowing that she won't tell
I also have other friends that I can hang out and have fun with and not
worry about being in a wheelchair. Luckily, I am not teased
When it does happen, one of the kids from my old school steps in and
the other kids why I am in a wheelchair.
The worst part
in a wheelchair is not being able to run, jump, or climb like my
I really dislike it when people pat my head and won't ask me questions
but will ask my father. I also don't like it when I'm out running
around and parents tell their children not to stare, but then they
themselves. I like explaining to little kids why I am in a
and watching them figure out what it would be like to be in one
being disabled is that I don't have to wait in line when I'm at theme
And the best thing about being disabled is being able to change
attitudes about disabilities one at a time. I figure that if I could do
that I could make the world more equal for everyone.
future I would
like to complete six goals:
to get a computer with an on-screen keyboard and a voice dictation
When I do I'll be able to write my own stories and do my homework
It will be great to keep up with other kids in class-work involving
next goal is an important one...not just for me, but for every disabled
kid who has faced the types of problems that I have. I hope to
all the schools in my town accessible for those with physically
including blindness and deafness. School should be accessible for *all*
I'd like to get a new power chair. I need a new chair because
is too small and it won't support my ventilator (I need to use one now
when I'm sick). If I have a ventilator on my chair, I won't have
to miss so much school. A new chair would also be able to
my computer so it wouldn't fall off when I do exercises to relieve
on my bottom.
this one has been a life-long dream. I want to get a 'Canine
for Independence'. I believe the dog would help me become more
and rely less on adults. As a teenager (when this was updated in
the dog would allow me to spend more time with my friends. With such a
dog, I would be able to pick up writing utensils, go places freely (the
dog could help to open and close doors, turn lights on and off, and to
get me help from adults when I need it.
next goal is a long-term one. I would like to go to college and
in education because I'd like to teach elementary school. I
that I was given the gift of being able to teach others, and I'd like
help kids be comfortable with and accept differences.
final goal is to become a well-known children's author. I
like to get some of the stories I've written so far published because I
know that children would enjoy them.
I'm convinced, will help me to live my life to its fullest.
I was sick
or 6 times four years ago when I wrote this update, and I needed to use
my ventilator most of the day. I
also only stayed at school for half a day. I did get my new
and my wheelchair is on order. I am being interviewed by the
and will be on the front page!!!
I also am a
and paid author. I wrote an article for Mary Beth's Beanie World
for Kids, March 1999 issue and got paid for it. I also write a
column for the WOW connection newsletter. And*da-dum*, there's a
article about me at the other end of this click!
it's me again...tonite
is my scout award ceremony, and I'm receiving over 40 badges, two signs
and a leadership pin (first time ever a junior scout won the leadership
pin...I feel so honored!). I'm excited, too, because my
and I actually designed our own badge for Disability Awareness.
out of school for the year. Two more finals, and then goodbye fifth
grade (that's my grade in 2000).
Even though I was only able to attend half-time all that year, I
able to keep up with all the work, with, get this, an A+ average. Bet
you can imagine that I'm smiling!
#1, I received my new chair, and am really enjoying it....zooming
I can even pop a wheelie all by myself....my dad doesn't like it, but I
sure do!!! They set my speed up and no one can keep up with me
out world, here I come!!
what I got in the mail today.....a new beach chair. I can sit in
the sand and play in the water now. I went outside and played
the hose and got all wet and watered the ground. I had a blast.
to all of you!