This morning I received word that my Aunt Angie(Dad’s sister) had passed away on Thursday. I knew that she had started Home Hospice and unfortunately, I knew exactly what would be responsible for her passing.
In 2009, I lost my Dad to Alpha-1 Antitrypsin Deficiency. If you have been a long-time reader of my blog, you know that I did not meet my dad until after I turned 18. Angie was actually my initial “contact” with my father’s side of the family and she is the one that told me stories of the family and history. We used to have phone calls all the time to chat about random things.
Alpha-1 Antitrypsin Deficiency is a genetic disorder. It is hard to explain in “simple terms” but the way I try to describe it is you are born missing an enzyme your body needs to protect your liver and/or lungs. You then are at risk for respiratory issues or developing things such as COPD and Emphysema at an earlier rate than someone that does not have Alpha-1. There is NO CURE for Alpha-1. There is only treatments.
When I think about the fact that a genetic disorder has now taken the lives of two individuals in my family, it scares me. While I know I am at risk, it is my children that it scares me about the most. The idea of knowing the weekly infusions my Dad and Aunt went through and the thought of them having to experience it is enough to make anyone think “Please don’t let this happen to them.”.
Angie, thank you for helping me “meet” the rest of my family. Thank you for sharing with me and giving me that chance to know you and my Dad. You fought long and hard. Fly High above the clouds.
To learn more about Alpha-1, visit the Alpha-1 Association.