If you went to my school, you would probably see me zipping around the halls and you would probably wonder who I was.  Well, wonder no more.  I'm here to tell you! 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 nine months old, my parents found out that I had Spinal Muscular Atrophy.  That 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 frequently, and have trouble eating.  The doctors told my parents to take me home and love me since I would die before I was two. Were they ever wrong!

On January 3, 1989, my sister Emma Clare was born.  We soon found out that she had Spinal Muscular Atrophy too.  Emma and I frequently got sick, but we still attended preschool. When I was three, my mom was killed in a car accident while on a lunch break from work. That was on June 4, 1991.  My dad 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 us 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!

My sister Emma

The sadness in my life didn't end that year, unfortunately.  In March 1992, my sister Emma 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' to run, play, roll down the steps, and walk. Free like she never was during her life.

To help heal the pain of losing half of my family, we started to travel and visit my aunts and uncles. We went to Ohio, Colorado, Wyoming, and Florida in the next nine months.  For some odd reason, after Emma's death, I became stronger and healthier for awhile.  I continued to go to school and take long vacations, even making it to Iowa twice.

Elementary School

I attended Elementary School for five years.  During the second year, my breathing became weaker and I missed a lot of school.   In third grade, my doctor 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 did 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 healthy and ready to tackle fourth grade.


Fourth grade, and this time I missed a lot of school, not from pneumonia, but from having an operation  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 surgery. 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 that one is writing a paper about me.  During the surgery, the doctor placed 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 write and feed myself all over again.  I also began having more problems with choking and I missed even more school.

Despite missing so much school, I managed to graduate, to have a part in our class play, and 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, listen to music, read good books, and hang out with my friends.  One of my favorite TV shows is Seventh Heaven because I can watch it with my father.  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 find me listening to country music. I love it because it's not loud and obnoxious, and because it talks about real life problems.

Like many kids, I collect Beanie Babies...all types! I have over 300 beanies, and that's only since 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 fusion! 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 them.  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 time because I travel.  During the school year, I kept extra busy attending 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 wheelchairs. 

Middle School

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 accessibility. This school, like many others, does not meet federal laws.  There are no regulation size elevators, accessible bathrooms or drinking fountains; 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 the beginning.  These are all things that I would fix if I were in charge.  I would also make adults take a disability awareness class, so that they would be more aware of the difficulties faced by people who are disabled. 

Now, onto the good parts.  The teachers were wonderful and were quite aware of my differences and how they do and don't affect my learning.  I also had many great friends.  I have one especially good friend who I can share secrets with, knowing that she won't tell anyone.  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 much.  When it does happen, one of the kids from my old school steps in and tells the other kids why I am in a wheelchair. 

The worst part about being in a wheelchair is not being able to run, jump, or climb like my friends.  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 stare themselves.  I like explaining to little kids why I am in a wheelchair and watching them figure out what it would be like to be in one themselves. 

One good thing about being disabled is that I don't have to wait in line when I'm at theme parks. And the best thing about being disabled is being able to change people's attitudes about disabilities one at a time. I figure that if I could do that I could  make the world more equal for everyone. 

In the future I would like to complete six goals:

First to get a computer with an on-screen keyboard and a voice dictation program.  When I do I'll be able to write my own stories and do my homework independently. It will be great to keep up with other kids in class-work involving writing. 
My 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 get all the schools in my town accessible for those with  physically disabilities, including blindness and deafness. School should be accessible for *all* kids.
Then I'd like to get a new power chair.  I need a new chair because mine 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 hold my computer so it wouldn't fall off when I do exercises to relieve pressure on my bottom.
Now this one has been a life-long dream.  I want to get a 'Canine Companion for Independence'.  I believe the dog would help me become more independent and rely less on adults.  As a teenager (when this was updated in 2004), 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. 
My next goal is a long-term one.  I would like to go to college and major in education because I'd like to teach elementary school.  I believe that I was given the gift of being able to teach others, and I'd like to help kids be comfortable with and accept differences.
My final goal is to become a well-known children's author.  I  would like to get some of the stories I've written so far published because I know that children would enjoy them. 

Meeting these goals, I'm convinced, will help me to live my life to its fullest.


I was sick 5 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 computer and my wheelchair is on order.  I am being interviewed by the paper and will be on the front page!!!
I also am a published 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 bi-monthly column for the WOW connection newsletter. And*da-dum*, there's a newspaper article about me at the other end of this click!

June 15

Hi there, 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 troop and I actually designed our own badge for Disability Awareness. 

Pretty soon I'll be 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 was able to keep up with all the work, with, get this, an A+ average. Bet you can imagine that I'm smiling!

July 27

Another exciting update. #1, I received my new chair, and am really enjoying it....zooming around.  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 anymore....watch out world, here I come!!

And #2,  Guess 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 with the hose and got all wet and watered the ground.  I had a blast.

Margaret Purk
Age 11

Merry Beanie Christmas to all of you!

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Write to MJ
To Margaret's own web page

Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: Noovember 2, 2005