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Hello, my name is Joey, and I am a very special little guy. I was born on Friday June 30, 2000 at 8:30 p.m. My parents couldn't have been more proud of me. I seemed to be a normal baby. I would smile and giggle at everyone, but I never really sat up on my own. I rolled over a couple of times, but didn't do the rolling for very long. When I was about nine months old my uncle Dusty came in to see me for the first time. He noticed that I wasn't hearing very well because I wouldn't turn towards him when he spoke to me. So my mommy and daddy got concerned and took me to the doctors to have my ears checked. They noticed that I was particially deaf so they gave me hearing aids when I was almost a year old. They seemed to help a little, but not to much, I seemed like I was in my own world. Then mommy and daddy got concerned again because I wasn't doing anything that a normal child my age should be doing, so they took me to the doctors again and they did lots of test on me to see what was wrong and they diagnosed me with Cockayne Syndrome. Well then around my second birthday I started to have severe seizures and they realized that seizures wasn't a part of Cockayne Syndrome. Then my muscles was starting to stiffen up and they didn't know what was causing that. Then nine days after my second birthday mommy gave birth to my brother. The doctors decided to go ahead and do test on him to see if there was anything wrong with him since I was sick. They did some test including an eye exam. The eye exam revealed some cherry red spots and his retinas. The doctors sat down and said that cherry red spots was not a part of Cockayne Syndrome and that we must have a miss diagnosis again because there is no was we can have a family with two children that have different diseases. So they did blood work on my brother since and they diagnosed us with Sandhoff Disease. The doctors sat down with mommy and daddy and told them that this diagnosis is worse then the Cockayne Syndrome because we will develop seizures and our bodies will slowly deteorate and that the life expectancy is only 3 years. Mommy and daddy got so scared and upset that they didnt know what was in store for us, but they took every day for granted and was happy to have us here.A few months after my second birthday I developed pneumonia and was hospitalized. The seizures has made my brain not react like it should and I lost the ability to eat. When I was about 2 1/2 years old mommy and daddy decided to get a G tube to help with feedings and medicine. It seemed to help, but I wasn't gaining any weight, I was just loosing weight.I kept developing pneumonia and I was hospitalized around 12 times within a year. My mommy and daddy kept telling me to hang on until my third birthday, so I did for them. I knew how important it was to them and the doctors kept telling mommy and daddy that there was no way I would make it to my third birthday, but I knew I could. Then to prove them wrong, I struggled to an extra three days, but the disease was getting to be to much for me and I couldn't keep up the battle and I was getting so tired. I lost the strength to keep fighting and peacefully slipped away to be at rest with god on July 3, 2003. |
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