NOTE FROM THE MACS STAFF

Kristopher's story was written before he passed away. We will update his story as soon as we receive more information from his family.

Kristopher had a completely normal childhood until the age of three. He passed all of his mile stones. He played as hard as a little boy could, along with his big sister Ashley. He was a very gifted and talented child, nothing could stop him.... until December 96. My son suffered his first of many seizures on December 25, 1996. This was one of the most devastating times of my life. When we got to the hospital, they said he fell out of his bubble car and not to worry, I was told it was an isolated seizure. We were relived. Our baby boy was okay.

On January 97, Kristopher was in my bed with me when he had his second seizure, I knew he did not fall out of bed, knock his head or anything. I called 911 and the ambulance came, they saw him have a seizure. We got to the hospital they also saw him have a seizure. This is when the nightmare began. I could see my son slowly declining for an unknown cause. Seizures do not make you lose word here and there. Due to the severity of his seizures, Kristopher had to always wear a helmet. Kristopher did not mind, he was full of life.

He was tested for so many different genetic disorders. They all came back fine. Kristopher had to take a lot of medicines, but his smile continued on. After 10 months of not knowing what was going on, Kristopher was hospitalized because he was unable to walk. The doctors said it was due to the seizure activity. I felt something was not right.

A skin biopsy was taken.... 4 days later, October 15, 1997, my birthday, I got the news. Kristopher was diagnosed with Batten Disease. A terminal illness. Life expectancy is 8-12yrs old. There is no cure or treatment. It takes all its victims. I was totally devastated. In my heart of hearts, I believe I always knew. Even then, Kristopher continued to smile and enjoy his race cars. He lived for race cars. Everything in his room was race car or race car related. Kristopher and his dad Mike used to watch race cars every Saturday and Sunday. Along with dad's cup of coffee, Kristopher would insist on having his coffee also. Dad would, of course, give him a splash coffee with lots of milk. Kristopher and dad had a routine down. Those are precious memories.

After 1 month of learning the fate of my son. Kristopher had myoclonic jerks. This took Kristopher down. He was in the hospital for 2 1/2 weeks. In this time, he was unable to walk anymore, he had to have a feeding tube put in and lost several words. He still smiled at great little things and even brighten up a day with his smile. To date, my brave hero is in a wheel chair. His seizures are under control. He deals with his secretions daily. Kristopher is totally dependent on Dad and myself.

Batten disease is an inherited disease of the nervous system. It takes a normal child from knowing their ABC's to not even being able to speak, then going blind then vegetative state and death. I can tell you that Kristopher is a fighter. He is my angel. I know he was given to us for a reason. I believe that the reason is to learn to grow in a different way. Kristopher has a smile that warms my heart everyday. He can no longer say mommy, but when he smiles at my voice, I know he knows I am there. I was blessed to be given two beautiful children and would like to share his story and show the world my son.

(..... to be continued .....)