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Volunteer Advocate
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Sarah’s Story


My name is Sarah, and I am the only child my parents had had because of the diagnosis of cystic fibrosis that struck our family when I was only 15 months old.

At the time, I was given a prognosis of living only 15 years, but because of medical research, this year, I was able to blow out 30 candles on my birthday cake!!!!

I am often asked to talk about my life with cystic fibrosis, to explain or summarize it, but I very rarely know where to start.  It’s a little like the white page syndrome.

I could tell you of the hours of treatments, the thousands of drugs, the shortness of breath, the fear, the daily experience of weakness, the day I understood I couldn’t dream of the future the way all the other girls in my class did…

But I could also speak to you about the strength, the passion to live, the love, unity and hope and the extent to which this disease belongs to me but also to my family, my friends and everyone I know and love.

My life is doubtless similar to the lives of many people living with cystic fibrosis.  But it is the way each one of us deals with this path that probably makes it unique to us.

As someone who loves to travel, I spent a long time as a travel advisor. A job I LOVE!!! Unfortunately, my declining health forced me to stop working almost completely for more than a year.

Right now, my only obligation is to take care of myself … And my 4-footed sidekick, Mr. Hope!

Actually, for the last few months, I have been on the transplant waiting list for 2 new, pink lungs.  Knowing that my long-term future depends directly on the success of this adventure, this great adventure, this transplant is the new dream I cherish most preciously.

I also dream of a future characterized by simplicity and spontaneity, qualities that are impossible when you live with a chronic disease.  I am talking about…

Becoming the owner of a 1978 MG Midget…..

Travelling to Jerusalem……

Writing projects……

In short, 1001 different projects inaccessible to me now but that a lung transplant would allow me to engage in!

That said, no matter how my story ends, my path will have convinced me of one thing: If I have the honor of celebrating a third decade in the company of the people I love, it will be because research has been effective.  The efforts of doctors and researchers in the many research programs no doubt will have been productive!

However, the battle against cystic fibrosis is still not won.  It is thanks to the generosity of donors that we can continue to make progress in research and continue to believe in victory.

In this holiday season, such generosity remains the most wonderful gift anyone could give me.

Thank you so much for giving generously and being the reason that I remain hopeful!

Merry Christmas!

– Sarah Dettmers

For Sarah, and everyone else with CF, be the reason for a cure: http://bit.ly/2ADWJym