Kody C. - Quilt Finished in 2008

Born: December 14, 2001

Illness: Hemimegalencephaly, Hemispherectomy, Legally Blind, Hemiparesis

Kody's Story

Written in January 2008

My name is Kody and I was born on Dec. 14, 2001. I have a twin sister named Kassandra. I was born with something called Hemimegalencephaly, also called HME, which is a very rare seizure disorder.  It occurred in the first 3 months of life in my Moms womb.  It is a brain migrational disorder.

I was full term but started having seizures within 1 hour of being born.  I was in and out of the hospital for the first 11 weeks of my life and then the decision was made to have a drastic surgery called a functional hemispherectomy.  My seizures were uncontrollable (hundreds of them a day).  I had the surgery at 11 weeks old, on March 12, 2002.  The surgery is where they remove some portions of my brain and then they completely disconnect the rest of it, so the seizures can not cross over to the good side (my HME was on the right side).  It was a very difficult time for our whole family and we did alot of praying!  I came through the surgery even though my family was very worried and I came home 1 week later.

I then got meningitis and had to go back in the hospital for a couple days.  We were told that I could get hydrocephaly from the surgery and unfortunately I started having symptoms (vomiting, crankiness and rapid head growth) and had to have an emergency VP shunt put in on June 29th, 2002 at the age of 6 months.

I was on 3 seizure medications and have been weaned off of all 3 of them!  The most important thing is that I am SEIZURE FREE!!!!

I have had numerous smaller surgeries besides the brain surgeries and I do face at least two more surgeries one to have a perforation closed in my eardrum but not until next year, and the other to perhaps break my jaw and fix it if it doesn't correct on its own. There is always the worry of shunt malfunction which could be very life threatening and would mean more surgery for me.

I do have left side hemiparisis (some lack of use of or weakness on left side) from the surgery and also a left field cut (I can not see anything on my left out of either eye unless I turn my head) and some other vision issues. I have compensated very well and I work very hard. I go to Pioneer (a special needs school) and I love going to school. I get my therapy there now and I am learning new things every day. I scoot all over the place. I am so happy I can get around now! I can't wait for the day that I can walk and run.

I am enjoying getting into things and my Mom and Dad love the fact that I can finally get into some trouble. They say I have developemental delays but I plan on catching up someday.