My name is Macey Elizabeth. I was born on February 21, 2003.

My parents are Tim & Carrie and I also have two sisters, Caleigh & Kendall.

When I was 3 days old, my family received some very sad news.

They were told that I have a very rare medical condition called Aicardi Syndrome.

There are only about 1500 known cases worldwide.

Aicardi Syndrome is a serious neurological condition that includes very hard to control

seizures and many other day-to-day challenges.

I have seizures just about every day and I am legally blind. I have some
 
vision in my left eye. I am able to see shadows, basic outlines and bright lights.

When I was 12 days old I had surgery so that I could have a feeding tube put in.

I was having a hard time drinking liquids and I was choking alot. Because of my swallowing problems,

I was not able to eat very much and was quickly losing weight. I'm also at risk for aspirating into my lungs,
 
which can cause frequent pneumonia, so my doctor thought it would be a good idea to do a surgery

called a Nissen Fundoplication at the same time. During this surgery, they put a band around the bottom part of my

esophagus so that I don't reflux my food and aspirate into my lungs.

Even though I have a feeding tube, I have always had the desire to eat & I'm quick to let my parents know
 
if I'm getting hungry. I am just unable to safely drink and eat enough food and liquids to keep me properly

hydrated and keep up with my nutritional needs. 

In the summer of 2004 I started having some respiratory issues. At first I would have very labored breathing
 
at times and be fine other times. Then my breathing started to get worse & worse. I was needing to be suctioned a lot
 
and even that didn't seem to help very much. Each month things got a little worse & after lots of testing and several scopes
 
from it became clear that I was having some serious upper-airway obstructions. In January of 2005, I had a special surgery
 
done called a UPPP, in the hopes of avoiding a tracheotomy. In this surgery, they removed my tonsils, adenoids, uvula
 
and also partially reconstructed my palate. This was all done to create more room in my airway, which would hopefully
 
improve my breathing. My parents were told that there was a good chance that eventually I would need a tracheotomy
 
done, but this was something we could try first. The surgery ended up not helping my breathing problems enough and

one week later I had the tracheotomy surgery done. At first it was a little scary because it was such a big change,

but now it's just another part of me and it's something we are all used to.

My medical care keeps us all pretty busy. I have lots of  appointments and my calendar stays

pretty full! I have physical therapy, occupational therapy and visual therapy at school. 

This year I am in 1st Grade & I attend school Monday through Thursdays.   I really enjoy school and love
 
being around the other kids and all the social activity of being in a classroom.

I have a very nice nurse, Rita, who takes good care of me while I am at school.
 
I also have a great group of people who work with me while I'm there. My teacher is amazing and all the aides & therapists

are really good at finding ways to help me participate in activities at school.

Most of my day is spent in my Life Skills primary class.

I also spend some time in a  typical 1st grade class for Art, Music and special activities like field

trips. One of my favorite things to do at school is use a switch to activate stories and games on the computer.

I also really enjoy recess & my school has a great new handicapped-accessible playground!

 


I am lucky to have a great group of doctors that care for me.

My pediatrician, Dr. Allender, is especially great. He always takes a lot of time with my
 
parents and he is the doctor who knows me best and is always looking for ways to keep me healthy!

The good news is that I am happy, content, and a very loved little girl.

When I was first diagnosed, it was very sad for my family to think of all the things I might never

be able to do. Now I am 7 years old & they can't imagine life without me. 

I have so much joy to give and I am constantly teaching people around me what is important in life.
 
To the outside world it may appear that I'm not able to do much at all,

however, those that take the time to open their hearts to me, will find that I have lots of love
 
to give and I communicate in my own very special ways. Those that know me best will tell you

that I am especially good at expressing my likes and dislikes!

Even my smallest accomplishments are huge in our house and I can melt anyone's heart when I smile!

For more information on Aicardi Syndrome, please visit the Aicardi Syndrome
Website at:  www.aicardisyndrome.org