Our Cystic Fibrosis story began over 22 years ago. Our beautiful baby girl was born on January 31, 2002. By the middle of February it was evident that something was wrong. She wasn't gaining weight the way she should have been. Our pediatrician sent us for a sweat test. When we got the results of that test, our lives were forever changed. Emma was in the cystic fibrosis range. We had never even heard of cystic fibrosis. However, we quickly learned it was not a diagnosis any parent wants to hear. At that time, life expectancy was early 30's. That's how old I was at the time. That just wasn't fair! I had a beautiful baby girl that we had waited 5 years to finally have and now we were being told she would only live less than half a life? We vowed to give her the best care we possibly could.
Here we are, 22 years later and we are so blessed to have a very healthy beautiful young lady. We could not be more proud. Emma is smart, healthy, and very compassionate. She brings out the best in many people. She has touched the lives of many people. Before my father passed away, he told me that she is his first thought when he wakes up in the morning and his last thought before he goes to sleep.
I will never understand why some CF patients are so sick and others so seemingly healthy. Emma has only been hospitalized 7 times in her life for "tune-ups". Once we got a handle on her sinus issues, she has been pretty healthy ever since. I will never take for granted her health knowing full well that this awful disease can kick into full gear at any time. However, we will also never give up the fight against it. We know that researchers are working very hard every day to develop new medications to cure CF and give our daughter the life she deserves.
Emma is on Trikafta which has been a true game changer What a miracle! Unfortunately there is a portion of the CF community that cannot take Trikafta and our CF community will not give up until they too have a miracle drug or better yet a cure for all!
Please help us fight this deadly disease that still takes way too many young people, way too soon. No amount is too small. Thank you.
Please support me!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.