Ali's Story: Big Challenges Conquered by a Bigger Heart | Scoliosis Research Society
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Ali's Story: Big Challenges Conquered by a Bigger Heart

When I was born, I was faced with many challenges.  I was put on a breathing machine immediately after I was born because I was unable to breathe on my own like most newborns.  When I was two days old, I was diagnosed with severe scoliosis and Multiple Pterygium Syndrome, a very rare genetic disorder characterized by minor facial anomalies, short stature, vertebral defects, multiple joints in a fixed position and webbing of the neck, inside bend of the elbows, back of the knees, armpits and fingers.  I also had a partial cleft of the soft palate.

When I was five days old, I underwent my first surgery to repair my diaphragmatic hernia.  At that time very few children with Multiple Pterygium Syndrome had survived past a young age, so my parents were terrified.  Having lost one child to the exact same condition as I have, my parents were worried I wouldn’t survive either.

I had been in the hospital for about seven days, and my parents needed to travel back home to attend the funeral of a family friend.  They were worried about leaving me, but the nurses assured them I would be fine.  That afternoon, before they could get back to the hospital in St. Louis from our hometown of East Prairie, Missouri about 2 hours away, they called to check on me.  The nurse told my parents that there had been a little excitement.  I had pulled my breathing tube out all by myself!  Miraculously, I was breathing just fine on my own, only two days after surgery, so the doctors decided to leave the tube out and see how I would do.  I did great!  Of course it gave my parents a scare but that was my way of telling everyone, I was going to be a very strong and independent girl!

When I was 7 months old, I had my first back surgery. This surgery was to place a titanium rod along the left side of my spine.  I was developing hyper-kyphosis or a twisting and “hunching” over of the spine.  The rod was going to try and keep my spine straight and keep it from curving anymore.  However, the rod was too big.  I only weighed about 8 or 9 pounds at that point, and was still very small.  They decided to remove one of my ribs and they used it to support my spine in place of the rod.  The surgery was successful, and at thirteen months old I underwent a surgery to repair my cleft palate.

As I got older, we realized that I was going to need multiple back surgeries.  No one wanted to operate on me because my case was so severe, and I was so small.  My doctors, in Nashville, Tennessee referred us to Texas Scottish Rite Hospital.  There they were able to take on my case and operate on me.  My first surgery there was the placement of a halo on my head.  This thing was huge!  I had just learned to walk and it made me top heavy, so when it was placed on my head, I had to relearn how to walk.  While wearing the halo, I was hung up from what looked like an IV pole.  A fish scale with a spring was hung to the top of my halo and then attached to the top end of the pole.  I wasn’t hanging completely in the air, but I was just barely able to touch the ground and wheel myself around.  This was supposed to help straighten and lengthen my spine.  It was successful!  But during the time I was wearing the halo, I had a little mishap.  I was just finishing with a bath, and my mom was getting my PJs on for bed.  I hadn’t fully learned how to balance myself, and I tried to stand up on my own.  I stumbled and tripped on a table chair leg and fell.  When I hit the ground, the screws that were holding the halo in my head were knocked loose.  This caused excruciating pain!  So to make me more comfortable on the 7 hour drive back to the hospital, my Dad had no choice but to unscrew the screws and remove the halo from my head.  We made it to the hospital where they replaced the halo on my head and made sure nothing went wrong, and then they sent us home.  From then on we had no more mishaps like that.  I learned how to walk!

As a result of the Multiple Pterygium Syndrome, my left leg is bent.  This means the nerve in my left leg is shorter than the bones in my leg which causes it to bend and not straighten out completely.  My doctors gave me and my parents an option of having surgery to try to straighten my leg but said that it was very risky and could result in me not being able to walk again after the surgery due to possible nerve damage.  Although I decided not to have the surgery, the doctors said that there were exercises that I could do to help increase the mobility of my leg.  These exercises were horrendous.  They were very painful.  I cried every time we did them.  They did help a little, but the doctors decided that I needed to wear a leg brace to try and help straighten my leg more.  This brace was pink!  My favorite color!  At that time, I was only five years old.

As I grew older I continued to face many challenges, from back pain to not being able to reach things other kids my age were able to reach.  The worst was being teased in school.  I was short for my age so I got teased about that.  It really bothered me and hurt my feeling.  I tried to just ignore it but it was hard.  When I would go out in public to places like the mall or amusement parks, people would stare at me.  Younger kids would snicker or whisper things to their parents or other kids. I was about five years old when I really started to notice the stares.  Over time I learned not to let those little remarks get to me, although sometimes it was hard.  I had to experience life’s ups and downs, but hey, don’t we all?

At the beginning of 2009, I went to Texas Scottish Rite Hospital for a regular checkup.  My doctor found that my spine was curving excessively again and decided that I would need another back surgery.  So in November 2009, I was scheduled to have surgery.  This surgery was the first one I remember very well.  It was very nerve-racking.  After surgery I had to stay in the hospital for about six days.  It was tough and very painful but I was able to fight through it.  For the next five months, I had to wear a full body brace that cover most of my body.  It was horrible but I got to choose the design it had on it and that made it a little more bearable.  I chose pink camouflage.  I had to miss about two months of school. When I came home from the hospital, I had to walk with a walker for a week or two to regain my balance.  Imagine being bent over sideways and then being straightened back up almost overnight.  That is a big balance change if you ask me!  But when I went back to school I still had to wear my back brace.  It was kind of embarrassing but nobody made fun of me.  Since this brace went halfway down my left leg, I was not able to sit in a regular chair.  I had to bring in a special chair to sit in.  That was embarrassing also because I couldn’t sit with all of my friends.  It was pretty hard to maneuver around school with this big brace on my body.  I had to leave class early so I wouldn’t get trampled by everyone changing classes.  I was so embarrassed by it all.  Finally in April of 2010, I went back to the hospital for a checkup and got the news that I was able to stop wearing the back brace.  Very good news!  I love the result of the surgery because I wasn’t so bent over and the best part was…. I grew over two inches!!

More about just Me:

I always had trouble with my height.  I have always been much shorter than all my friends.  It bothered me that I couldn’t reach everything.  I wanted so badly to be able to do the things my friends could do without using a stool or have someone else get it for me.  But usually if something was too high, I would find a way to get it.  Whether it is climbing, using something to knock it down or just simply jumping.

The worst part of being short and looking a little “different” than everyone else is the teasing, and the name calling, and the staring.  When I was younger I used to get made fun of for my height.  Kids would call me midget, shorty, dwarf, and other names.  Everywhere I went, whether it was the mall or the grocery store, people would stare at me.  When I was younger, I didn’t really notice the stares but the older I got the more I paid attention to them.  I would always ask my mom why so many peopled looked at me.  She would tell me that they were just curious, but deep down I knew they looked at me because I looked different from everyone else.  I finally got used to it and eventually just started to ignore the stares.

As I started to enter Middle School the teasing was less frequent and everyone knew why I was different.  They were my friends now and they always try to help me as much as they can.  When I entered Junior High School, everyone started to hit their growth spurt and they started to wear new clothes that were from really cool places like Abercrombie & Fitch, American Eagle, and Aeropostale; but I was still too little for those clothes to fit.  I hadn’t hit my growth spurt yet and that was when my difference started to really bother me.  Despite being a lot smaller than everyone else, I never got teased about it in Junior High.  As the school year went on I got over not being able to wear the same clothes as everyone else.

At the beginning of the second semester of seventh grade, my physical education class started a fitness unit, which means we have to run a mile every other day and exercise on the off days.  My PE coach had informed me that if I ever started to hurt anywhere, I was allowed to stop running; but I am the kind of person who won’t stop doing something unless it is seriously hurting me or if  I’m just straight up tired. 

A week or two after I started running the mile I noticed some tingling in my left hand.  I thought maybe I had just slept on it wrong the night before so I just blew it off and kept running the mile every other day.  However, as I started to run more and more each day, the tingling got worse, and now my left leg started to tingle.  I noticed the tingling more when I sneezed and after I ran, so I decided that I needed to tell my Mom.  After I told my mom, she made an appointment to go see an orthopedic spine specialist.  When I got to my appointment, things were not routine.  The doctor told us that there was some decreased space in the area of my upper spine below my neck.  It looked oval when it should have looked round.  I was immediately referred to a neurosurgeon.  After further testing, they diagnosed me with cervical stenosis, or a narrowing or collapsing of my spine.  The neurosurgeon figured out that all the jarring motion from running the mile in PE class was putting pressure on the area of my spine that was already narrowed.  The solution to the problem for now… stop running the mile.

Currently we are monitoring the top of my spine and make sure there is no numbness or tingling in my arms or legs. My doctors are not sure if the stenosis is something that is happening as a new symptom of my syndrome, or if it has always been there, but had never been a problem and went unnoticed until recently.

At Present:

I am 15 and a half years old, and I just passed my drivers’ permit test last July.  My Mom and Dad bought me a car, so that we could get the necessary pedal extensions put on the gas and the brake so that I can practice driving as much as possible.

I am a veteran baton twirler of over 12 years, and have participated and won gold medals and awards at twirling competitions all over the country including the Amateur Athletic Union (AAU) Junior Olympics competitions.  I am second seat flute in our High School Band, and I hope to move on to be one of three Majorettes, along with my very best friend next year.

I love music, and I love to sing and play the keyboard.  I am self-taught and I play my keyboard best by ear, which means I figure out how to play music and songs by listening to it first.  It is a talent my Mom and Nannie tell me I got from my late granddad.  He passed away when I was 3, but I do remember him playing his guitar.

Right now, I am at the top of my class academically, and I hope to finish in the top ten when I graduate.  I want to attend Texas Christian University (TCU), in Fort Worth, Texas for two primary reasons:

  1.  I can pursue a career in Child Psychology, and work as a volunteer at Texas Scottish Rite Hospital in Dallas while I am in school.
  2. TCU has a marching band, and I want to continue my baton twirling as a feature twirler in college.

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