In 2015, Henry was prenatally diagnosed with cystic fibrosis- a potentially life-threatening genetic disease affecting mainly the lungs and pancreas. It threw us into a whirlwind of unknowns and scary google searches, which we will never forget. But, on May 30, 2016, Henry was born and we met the most perfect baby boy.
Henry was lucky enough to trial a miracle medication, Kalydeco, as a toddler which turned his life around. He regained function of his pancreas and stopped taking more than 20 pills a day. Since starting Trikafta in June of 2022, he has decreased his vest treatments and stopped his nebulizer. We have no reason to believe that his lifespan will be shorter than anyone else’s. We truly never imagined this reality.
These advances in treatment and medicine would not be possible if it weren’t for those of you that have helped to support the CF Foundation- through your donations and by spreading awareness. Research has made such an impact on Henry’s life, our lives, and we must continue to push forward!
Although Henry has had a fairly healthy 6 years of life, there have been challenging days because of CF. He still spends at least 30 minutes a day (when healthy) hooked to a machine and must maintain a regimen of pills. Sicknesses and some normal family activities are still scary to us! Henry has become more and more aware of CF and often feels down about his diagnosis.
Henry is one of the strongest, sweetest, and funniest little boys we know (biased, but still). We continue to raise awareness and funds for the CF Foundation so that one day our little boy will have no restrictions in life. We also wish to support a community which has given us more love than we could ever give back. We need a cure for CF which has already taken the lives of way too many.
Please consider walking, donating, or simply sharing our cause with the world! Henry’s Herd has raised over $43,000 since 2016- all for research for a cure. We are grateful beyond words for your support; we cannot stop until a cure is found!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them. Will you join us? All we need you to do to become a member of our team is click on the "Join our Team" button. From there you can make a donation and start your fundraising.
By becoming a member of our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
FOR YOUR SAFETY AND THE SAFETY OF OTHERS: