At just 8 days old, Austin and I received a phone call no parent ever wants or expects..Harper’s newborn screening results showed Cystic Fibrosis - we will never forget that phone call. The next weeks were a whirlwind, that next day we were at Harper’s first of many appointments at her CF clinic getting confirmation of our biggest fear. How could this be? It has to be a mistake. Can we test again? What’s going to happen? What exactly is Cystic Fibrosis? So many things were running through our heads. We were beginning a journey we had no idea we were going to be a part of but we couldn’t ask for a better tour guide to teach us and take us on this journey - you ask Harper what she has and she will tell you Cystic Fibrosis! (or "65 roses", look up the story =p). Harper is absolutely amazing and a true warrior - she astounds us and brings us so much joy, she already has so much to offer and LOVES being a big sister and preschooler! We are going to fight in every way we can to get our amazing warrior the healthiest, longest, happiest life possible! There are no words for Austin and I to describe how thankful we are for all the love and support we have received along our journey so far - some days are extremely tough and some days we almost forget how we are "different" but knowing Harper has so many of her heroes fighting with us, brings us so much hope.
Because of events like this and fundraising - Harper began a life changing medication over the summer specifically for Cystic Fibrosis which has decreased her frequency and intensity of illnesses! From acquaintances years ago to close family and friends - every message, every donation since starting our team and this fight for Harper - has meant so much to us. We hope you will join Harper's many heroes and continue the fight to help our beautiful Harper, CF research and the CF community - thank you from the bottom of our hearts!
Thank you,
Colleen and Austin
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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.