Hello, everyone! Welcome to my blog, where I share my life stories and experiences with you.
Today I want to share something very personal and important with you. As some of you may know, my amazing son Greg is living with Juvenile Huntington's Disease (JoHD). Huntington's Disease is a genetic disorder that affects the brain and causes progressive loss of physical and mental abilities. It's a very cruel and devastating disease that has no cure. Greg inherited the faulty gene from his dad, who got it from his dad. Greg's Pepaw and Gramma Jack both passed away from Huntington's Disease.
Greg started showing symptoms as a teenager, and decided to get tested when he was 18 years old. He wanted to know if he had the gene or not, and if that was responsible for all of the health issues he was dealing with. The test was simple: a blood sample and a few weeks of waiting. The result was not: Greg tested positive for Huntington's Disease.
A positive CAG means that the person will have a 100% chance of developing the disease at some point in their life. It could be in 10 years, or 20, or 30, or more. There's no way to predict when it will start or how fast it will progress. There's no way to prevent it or treat it. In Greg's case, his showed early, or juvenile, onset. JoHD was the cause of his health decline, and he had also developed epilepsy as a result.
He is such a brave and cheerful guy, and his laugh always makes me smile. He inspires me every day with his strength and optimism. Greg decided to not let Huntington's Disease define or limit him. Living with JoHD is not easy, and Greg faces many challenges and difficulties. But he never gives up, and he always finds joy in the little things. He loves playing video games, reading comic books, joking with friends on Discord, and watching movies. He will tell you that there is nothing a cup of coffee and some mac n cheese can't fix. Greg has a great sense of humor, and he cracks me up with his jokes. He is always positive, and I'm so proud of him.
I hope that by sharing our story, we can raise awareness and support for Juvenile Huntington's Disease research and treatment. It's a rare and devastating condition, but there is hope for a cure. Greg is not alone; he has a wonderful community of friends and family who support him and care for him. We are grateful for every day our family has together, and we look forward to the future.
Thank you for reading this blog post, and please feel free to leave your comments or questions below. I would love to hear from you and connect with you. Until next time, stay positive and keep smiling!
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