Today was one of those days that I won’t easily forget. A sweet lady, Gina, asked to sit down on our bench in the hotel lobby. She had an oxygen tank and clearly was out of breath. After making sure she was ok, we started chatting and she started telling us her story about how she recently was finally diagnosed with Alpha-1, a genetic disorder that affects your liver function and that in turn affects your lungs, a disease dating back to a genetic mutation from the Viking days!
She continued to tell us how she was misdiagnosed for years and at death’s door and just knew there had to be a better way and that something was wrong with her treatment and as she kept seeking for answers, she discovered that she has this genetic disease. Now she is a walking testimony of the great work that the Alpha-1 Foundation does for those with this disease (they were having a conference in the hotel I was staying in). She shared with us how it is free to get tested for the disease with a simple blood test and how it can really make a big difference if someone is diagnosed at a younger age.
At the time, I was meeting with Arlene, from Inspire Charter School and another friend. We were all so happy that Gina sat down right where we were, because none of us has ever even heard of this disease! What was even more remarkable was her journey and how she never gave up, even when she was near death. She questioned the doctors and kept searching for answers on her own. She just sounded like a true homeschooler! When she found out that we were homeschooling, she said that she would’ve done it if it was an option when she was younger and she mentioned how she skipped high school and attended community college herself instead!
This experience inspired me just once again to continue encouraging our children to always use critical thinking, question those in authority when needed, not just blindly following the “expert” advice. It was also another reminder of how perseverance is such an important character trait to teach. I love how homeschooling allows us to have more time with our kids and it makes me so grateful that I’m able to be around to teach these important traits to my kids and the kids at Learn Beyond The Book.
Thank you for capturing our experience with Gina in your wonderfully written Inspirational Day article. Another facet to Gina’s story along the lines of questioning the experts and advocating for yourself is how a young intern on rounds recognized Gina’s symptoms from his studies. He wasn’t afraid to share his opinion with his experts. It doesn’t matter who you are, or how old you are … your ideas and opinions can change someone’s life.