21 year old Angel
Cory was diagnosed in April, shortly after his 15th b’day with JHD. Cory was born 3 months premature, weighing only 2 pounds when he was born. Noone thought he was going to make it. Several hours after his birth when they finally allowed me to see him, in his little incubator on a ventilator, feeding tube and numerous other machines, propped on his side, he was trying to push himself over. I knew at that moment that I had a little fighter on my hands and he was going to be fine.
When he started school, he had some learning difficulties and a slight speech impairment. When Cory turned 8 yrs old, we noticed a facial droop and drastic decline in speech. After an MRI, we were told by a neurologist that Cory had Encephalopathy….a big word for degeneration of unknown reason. After some intensive speech therapy, Cory improved. At age 10, Cory started walking on his toes, again we took him to therapy and got braces and it improved. Then a little over a year ago, he had another decline, this time affecting his posture,walking, speech, and his favorite thing, ability to play video games. Numerous neurologists and tests later, we ended up at Children’s Healthcare of Atlanta, again no one believed me that my son once played like other children, until they saw our home movies. On April 9th 2009, we were given the diagnosis. I cried. I screamed. Then I cried some more. As a mother we are supposed to kiss the hurt way. With HD, the hurt is more than you can imagine. So we promise, as long as there is breath in our bodies, we are going to fight this with Cory, for Cory and all the others affected by this.
‘He had the best kisses. when he was little, i used to get migraines, a lot. he and his sister were good about being quiet, or sis would go outside, and he would sit in his door way, to keep an eye on me!
After a while, we learned that his kisses were magic! he would see my lying down, ask where my head hurt, and give me the lightest kiss to wherever I pointed, in no time, i would feel better!He also loved hugs. He once got in trouble at school because the teacher couldn’t start her day until he hugged each and every person. so we brought him to school early every day.
He once hugged a complete stranger! we were at the grocery store checking out, and you could tell the clerk was having a bad day. he had asked for candy, he hardly ever asked for anything, so of course i said yes. I don’t think I have ever told him NO! lol So he watched for her to scan his candy, then walked around to give her a hug, niether of us saw him, i just heard a sound of shock and her jump! She stopped what she was doing and gave him a hug, when she stood, she told the other customers sorry, but she needed that hug, and she was holding back tears. After that, every time she saw Cory, she had to get her hugz!’ He loves motorcycles. He left us so many amazing memories. Feb 16, 1994-Dec 12, 2015.
-Stacey Cory’s Mom
Stacey (Cory 21)- well…..it’s sad that since the discovery of the gene, that our countries high divorce rate, that blood tests that used to be required for marriage checked for venereal disease and not genetic disease it’s also sad that these kids have to miss out on so many things-driving a car, dating, friendships BUT, I do believe they (JHDers) are angels here on earth, and each have a purpose to fulfill in their short lives.