Welcome to my blog! What is Cystic Fibrosis....?

Welcome to my blog – LIVING WITH SIXTY FIVE ROSES!  My name is Michelle Brown, and I am the wife of a man who suffers with Cystic Fibrosis (CF), a debilitating genetic disease that affects 30,000 people here in the U.S. alone.  It is a genome mutation that causes persistent lung infections and progressively limits the ability to breathe. In people with CF, a thick buildup of mucus affects the lungs, pancreas and other organs.  Often, this disease is terminal, with double-lung transplants being the only option to prolong life. 

 So why “sixty five roses?”  I was touched by the story of Mary Weiss.  She was a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. She called on many organizations seeking financial support for CF research. Mary's 4-year-old son, Richard (Ricky), listened closely to his mother as she made each call. After several calls, Ricky announced "I know what you are working for." With some trepidation, as he did not know what cystic fibrosis was, Mary asked, "What am I working for, Ricky?" He answered, "You are working for 65 Roses." Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. It does, however, conjure up hope, inspiration and love.  All things I hope this blog will do.



I met my husband, Bobby, when I was in 4th grade.  I knew then that I would marry him. I learned he had CF when we were freshmen in high school.  We maintained a friendship all throughout our school days, but became inseparable at 19.  We married at 25, and welcomed our beautiful boy at 26.  However, this is no fairy tale story.  Being a care giver to someone with a chronic illness took its toll on our relationship.  We divorced in 2009 after a long struggle.  Then, in 2013, we came back together and have recommitted ourselves to our family.

 

 

 

Why do I share this background with you?  Simply because we are not alone.  I will chronicle our lives with this blog, in hopes of having people understand what it takes to manage this awful illness, and in hopes that those who are going through the struggle can share their success stories to inspire others to not give up hope.  Bobby will be placed on the double-lung transplant list by October 20th. I welcome anyone who’s going through this, been through this, or expecting to go through this to be active and share in my commitment to a community of love, hope and inspiration.