Though it is time for homecoming in my town (Go Gophers!), I’ll be going purple this month for Cystic Fibrosis Awareness instead.
Though none of the spoonie illnesses are friendly, CF is just truly vicious.
If you aren’t familiar, Cystic Fibrosis is “an inherited life-threatening disorder that damages the lungs and digestive system.”
CF is close to my heart for several reasons.
First, last month, I posted over my social media that it just broke my heart when Claire Wineland passed away due to complications related to her CF necessitated lung transplant:
Claire was a gifted speaker and was an activist for the chronically ill for years – despite her youth and her worsening illness.
https://www.cnn.com/2018/09/03/health/claire-wineland-obit/index.html
She was only 21.
Another precious young woman, Libby Hankins, from the town of Gordo – about an hour from my home – passed away in 2017, almost a year after receiving her CF related lung transplant.
Despite her illness, prior to her transplant, she completed her coursework at the University of West Alabama (and was also a cheerleader – even with serious lung disease!) to be a teacher and was in the process of completing her student teaching at the time of her death.
She had a wonderful Christmas at home after her transplant – which was a miracle since many of her Christmases had been spent in the hospital – before she contracted an infection for which there was no cure.
She was only 23.
I want to mention also that most of her Christmases were spent in the hospital because her family scheduled her IV antibiotic therapies and her multiple sinus surgeries around school breaks throughout her life so she could have a “normal” school life. Before her last Christmas, she had only been home for one other Christmas that she could remember. CF is brutal in so many ways.
Since she passed away, her best friend and her mother have started a foundation in her memory that does so many wonderful things in the community, helping local schools, libraries, and families:
And, finally, sweet sweet Mary.
Mary is a CF fighter and her husband, Peter, is a pastor. They are precious people and they vlog about their journey daily.
This video is about 27 minutes if you have time to watch it.
Over the years, they have vlogged openly about topics as personal as Mary planning her own funeral and why they aren’t having children.
I love Mary so much.
So, in honor of Cystic Fibrosis Awareness Month, I would ask you all to do one super important thing:
Please be sure you are an organ donor. Mark it on your driver’s license. Tell your loved ones. It is so so important.
(Even I am an organ donor – and I can’t imagine who would want these parts.) =D
Wear your purple too and spread awareness. More research and more funding are so needed.
And please keep sweet Mary in your prayers. Her lung functions have not been great recently and she has been unable to tolerate the IV antibiotics she desperately needs so her team is struggling to come up with next steps.
Be well, everybody.
Grace and Blessings.
the autoimmune hippie. 