You have made a difference…


September 12, 2013

Dear Readers, Family & Friends,

I want to share some wonderful news with all of you and hope you pass it along.  For twenty-one years, my sister Colleen and her husband Fran have held on to hope and faith.  They have fought along with many to find a cure for Cystic Fibrosis for their two daughters and thousands of others.  I know that each one of you reading this has taken a heartfelt interest in our endeavor as well.  Whether it was donating money, walking in our annual Great Strides Walk or sending positive thoughts and prayers, you did what you could.

Today, I not only want to thank you from the bottom of my heart, but share wonderful news.  Three weeks ago Alexandra began her participation in a pharmaceutical study for a new CF drug that actually allows her body to function “normally”.  Without getting into too much detail, I will tell you it’s a blind study- meaning we aren’t sure whether Zan received the actual medication or a placebo and if she did receive the medication, what dose (there are two, a high dose and low dose.)  However, a positive sign that Zan may in fact be taking the actual medication showed as she has seen marked changes.  Within days of taking these “pills” she began coughing up large amounts of green, thick, sticky mucus that had been trapped in her lungs, filled with the bacteria and viruses that have continually put her in the hospital for tune ups.  For years Zan would cough and cough, but has never been able to really bring up any of this junk in her chest.  This past Monday, she was once again admitted for another round of very serious antibiotics and intense chest physical therapy- with the hope that this obstruction of mucus would continue to thin and the antibiotics would do their job, killing whatever is harboring in her lungs. 

This morning my sister called me, hardly able to contain herself.  Hoped brimmed from her voice a she explained that Zan called to say she was now coughing up large amounts of thin, stringy, yellow colored mucus.  Now for those of you who don’t understand what this means, I’ll explain as simply as I can.  With CF, the body produces this extremely thick, sticky mucus which is very difficult to get rid of.  It stays in the lungs where harmful bacteria and virus (like MRSA and pseudomonas) find cozy homes.  Over time, the mucus clogs the airways causing a decrease in pulmonary function (making it difficult to breathe).  The possibility that she may be on this “medication”, would allow Zan’s body to function normally.  Allowing her body to cough the mucus up and thin it so the antibiotics can do their job.  Our hope is that once this awful stuff has thinned from her lungs and the bacteria and viruses are killed, her lung function will improve dramatically.  THIS WILL CHANGE HER LIFE!

This is the closest the CF Foundation has come to finding a CURE!  And it’s happening right before our eyes with our Alexandra.  Although we don’t want to get too excited, we can’t help but be filled with hope that this is really it!  Lives are going to change for the better for SO many.  So please know how much all of your support and prayers mean to our family and the thousands of others who are touched by this disease.  All the fundraising and donations and prayers have truly made a difference. 

Please continue to say prayers as this is just the beginning. Zan has a long road ahead in the study regarding the effectiveness and the safety of this treatment. Again, there are no guarantees that she is actually on meds, but we are hopeful and seeing some positive signs.

With Much Love and Gratitude,

A CF Aunt

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4 thoughts on “You have made a difference…

  1. I am smiling for your family right now. It is so wonderful to have something possitive in a persons heart and yours is evident. Blessings to you and your family and know I will keep your Zan in my prayers.

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  2. What fantastic news!!! Zan is such a brave young lady, always has been. My prayers have always been with her and the family and knew that her courage and the love from all would get her through this. Thank you for the update and we will coninue to pray and cheer her on!!!

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