In addition to being former preemies with sensory process disorder, both of my children have a potentially life-threatening genetic disorder called Alpha-1 Antitrypsin Deficiency. Both of them are at high risk for accelerated lung decline in the form of genetic emphysema along with cirrhosis of the liver. So far, they are doing quite well, for which I’m so grateful.
When my oldest, Gracie, was diagnosed, I became involved in the Alpha-1 community. Very few parents were participating at that time, though. Upon my arrival, I met many adults who live with the effects of Alpha-1. They are frequently short of breath or fighting liver disease. Unfortunately, I’ve also lost many friends and acquaintances to the devastating effects of Alpha-1. Last month, I lost a very good friend, Ed. I’m grieving his loss pretty profoundly still. Here is what I said at his funeral service. I miss him, and honestly, I find it hard to be hopeful when another member of our community becomes an Alpha angel. Grief keeps seeping in, but I know Ed would want me to press on.
When I met Ed in 2005, I was a newbie to the Alpha-1 community. He and I were elected to the board of the Association that year. Previously, I had read his story in the Alpha 1-to-1 magazine.
I was touched by his amazing dedication to give back to the COPD, transplant, and Alpha-1 communities. As a mama to two beautiful little girls who have Alpha-1, I was always looking for inspiration. Ed was pure inspiration to me.
In fact, the day we met I will never forget. He sat down next to me and said, “Jen, tell me about yourself, and about those beautiful girls I’ve heard so much about.”
That conversation created a connection.
And that, to me, is the epitome of our precious Ed Brailey – connecting Alphas one-by-one using his subtle charm and unpretentiousness.
When Alpha-1 came into my life, I felt very alone. There were not many parents of Alpha-1 children that I could find at that time.
Ed helped reassure me as I doubted how much of an impact I could make or how much I could help.
I remember the smile that grew upon his face as he said, “Jen, keep up the great work. We need to bring the kids into our group. You being here will help draw out the other parents. We’ll do it together, Jen!”
I couldn’t help but smile in return.
Ed may not have realized how much he cemented my connection to our community, but I know one thing for certain.
I promise to continue the mission until every last Alpha gets the cure.
So thank you, Ed! Our world has an Ed Brailey-sized hole in it. Your dedication, perseverance, and amazing service will be missed.
Long live the Alphas!
God speed, Ed!
Jenabur shares her photography and blogs about life with the Alpha Girls at Unique But Not Alone.