My name is Macey Elizabeth. I was born on February 21, 2003. My parents are Tim & Carrie
 
and I also have a big sister named Caleigh who is 7 years old. I am lucky to have a sister like Caleigh.

She is always so sweet to me & loves spending time with me. When I was 3 days old, my family received
 
some very sad news. They were told that I have a rare medical condition called Aicardi Syndrome.

There are only about 500 cases worldwide. Aicardi Syndrome effects the central nervous system pretty severely,

so I have a lot of challenges. I have seizures just about every day and I am legally blind. I have some
 
vision in my left eye. The doctors think that I can 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.  I can eat some pureed food by mouth. 

My favorite things to eat are mashed potatoes, applesauce, blueberry yogurt and ice cream (of course!) 

This summer my sister discovered that I  LOVE popsicles!

In the summer of 2004 I started having some respiratory problems. 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 a serious upper-airway obstruction. 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 we're all getting more comfortable with my extra medical needs.

In February of 2005, we also learned that I have a heart condition called AET. Thankfully, it is something that is controlled
 
with a combination of two medications and I'm doing great now that my I am on my heart meds. Eventually when
 
I am older, I may have to have a radioctive or surgical procedure done to fix this heart problem, but for now my doctors
 
feel that the medication is a better and less risky option for me, because I'm still so young. 

*Update (May 2007) I have been able to go off both of my heart medications successfully.

My cardiologist remains hopeful that I have "outgrown" this heart condition and as long as my EKG's
 
and Holter tests continue to look good, I will be able to stay off of the heart meds--yipee! :)

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. 

I attend preschool 3 days a week for 2 hours each day. I really enjoy school and love
 
being around the other kids and all the activity of being in a classroom.

I have a very nice nurse, Kathleen, 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, aides & therapists

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

One of my favorite things to do at school is use a switch activated bubble machine so that

I can blow bubbles along with all the other kids.


 


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 is good about checking in on me from time to time.  

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 4-1/2 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.

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