Today I am writing about something that is important to me. On July 8th, 2014 my dad was diagnosed with Huntington's Disease. Prior to his diagnosis I had done research and basically decided for myself that I thought he had this particular disease and that getting him tested would be a good idea. I was hoping I was wrong, but knew I was right. Huntington's Disease is a currently incurable, horrible, degenerative disease that gradually chips away at every aspect of a person. It takes a toll on people mentally, physically, and emotionally.
After the doctors confirmed that my dad did indeed suffer from this disease I googled symptoms and read horror stories of victims until I was sobbing. Every person progresses in the disease differently. I have seen the changes in my dad physically as he has lost a lot of his ability to exercise and build muscle. I have seen him struggle with his speech and thinking of what he is trying to say. It has affected him in more ways than I would have ever imagined and has been a struggle for both him and our family, but honestly, he has it good.
He has continued doing an amazing job in his career and has kept up with his responsibilities in church. He has proven that he can continue being the man he was and that he doesn't have to let the disease define him. There are so many cases of people with Huntington's Disease that are worse. Cases of people who die within 5 years of being diagnosed. People who completely lose their ability to speak within 2 years and have to be sent to nursing homes at the young age of 40. I am thankful for my dad and love him more than I could ever express. He is a great example to me of how to be strong through times of trial.
But there's more. Huntington's Disease is genetic. Most people get the disease through an affected parent with the mutated gene. My dad has a rare case of a mutated gene that randomly developed not as a result of a parent having it. Even though he did not receive it from a parent, from this generation on, it is genetic. There is a 50% chance my brothers and I could have Huntington's Disease. This didn't set in at first. All I could think about was my dad and the hardships he would face and whether or not he would be okay. But one day while talking to a close friend about everything on my mind, I realized that I was in this too. It is a painstaking situation. Not knowing whether or not you want to be tested, not knowing what you would do if it was positive, and not knowing what the future holds.
Through all of this, the one and only true comfort has been through my Heavenly Father. I have prayed countless times to find solace and comfort in him and every time I have felt his love wrap around me letting me know it will all be okay. I don't know if this will be just my dad's burden or my brothers and mine too. But what I do know is that I feel a strong confirmation that I will have a family one day and will live a life up to the potential I know I can. I have confidence in the plan of my God and know that if I trust in him, everything will be okay.
Today as I have thought about this disease and its ripple affects through families and generations, I feel it confirmed to me that I need to do something about this. Cancer, Alzheimer's, Parkinsons, and other big name diseases have countless fundraisers that raise awareness and money to help find cures. Huntington's doesn't have the same following. 1 in 30,000 people in America suffer from Huntington's. Even though this is only a small blog post probably being read by only a few family a friends, this is the beginning. I am starting today to think of ways and ideas for new fundraisers to help with gaining both funds and awareness for Huntington's. We live in a world of so much innovation and technology and I believe that the cure is close. Because I have a family member so close to me affected, I intend to do my share to aid in that.
This is the beginning of what I hope to be an eye-opening and enlightening journey to finding the cure. I love all my friends and family and am thankful for everyone who has shown love and support to both me and my family. I am ready to make a change.
I don't know you but my aunt does and told me about your family. My husbands family has been affected by Huntington's disease, including his mother, who died of complications from it 10 years ago. If you need anything- a shoulder to cry on, someone to talk to or anything else, let me know. We are in California but the rest of the family is in Utah (my sister in law already said she would love to talk to any of you). Send me an email if that's something you are interested in. Tiffaniriz23@gmail.com
ReplyDeleteStay strong and don't lose hope ❤