My Sister Amanda

My sister-in-law Amanda Cross passed away in the wee hours of last Wednesday, March 28th after a life long battle with cystic fibrosis. I wanted to talk about Amanda because of the challenges she faced in life as a woman living with a terminal illness that not many people know much about. Cystic fibrosis is a genetic disease in my sister's case mainly affected her lungs and sinus causing build ups of mucus to make it hard for her to breathe. There is no cure for cystic fibrosis yet and the is very little said about it in the general media. It is interesting to me that most Americans do not know what cystic fibrosis is being that, at least for the time being, the majority of the population is Caucasian. Cystic fibrosis effects one in twenty-five people of European descent (according to http://www.patient.co.uk/doctor/Cystic-Fibrosis.htm), but the fact that most patients with cystic fibrosis do not make it out of infancy and rarely childhood might make up for the lack of knowledge on the subject. The average lifespan for someone living with cystic fibrosis is now thirty-seven years old a huge increase even from 1990s when my sister was diagnosed with cystic fibrosis (http://www.nlm.nih.gov/medlineplus/ency/article/000107.htm).
I found this article in the New York Times today (http://www.nytimes.com/ref/health/healthguide/esn-cystic-fibrosis-ess.html) which was a hard pill to swallow, my father-in-law had told me about a drug that was close to hitting the open market that would not cure Amanda but would cause her cystic fibrosis to not worsen anymore than her current state, if she could just pull through her most recent hospital stint. Hospitals are a place families of cystic fibrosis sufferers know well, since sinus infections and influenza can cause most cystic fibrosis patients into the hospital for breathing treatments and IVs to assist their bodies in battling common illnesses.
Although technological advancements that have brought along modern medicine to where it is today regardless most cystic fibrosis sufferers typically have multiple sinus surgeries and on most occasions need a lung transplant sometime in their life to stay alive. My sister Amanda fought her disease bravely for twenty-two years and lived a very full life but in the end her disease bested her body but I know in my heart of hearts her spirit lives on.

"Those whom the Lord has ransomed will return; they will enter Zion with a happy shout!
Unending joy will crown them, happiness and joy will overwhelm them; grief and suffering will disappear" (Isaiah 51:11 NET)

If you'd like to know more information or donate to the Cystic Fibrosis Foundation here is a link to their website: http://www.cff.org/