My Great Strides Story
Leesa Thornhill
Leesa Thornhill
Meet Bowen and Brinlee- our fierce duo!
Bowen was diagnosed with Cystic Fibrosis from the newborn screening at 3 weeks old, Brinlee was diagnosed in utero… for both this has meant years of multiple daily medications, nebulized breathing treatments, vest therapy, quarterly clinic visits and many annual tests, pokes and scans from their long list of doctors that have now become more like family to us.
Bowen and Brinlee are full of action and excitement, Bowen loves all things sports. He plays soccer and basketball and can tell you the name, team and number of just about any player in the NFL. Brinlee is a total fashionista, she loves art and all things girly. She most recently started hip hop dance classes, after she decided ballet wasn’t quite free spirited enough for her 😊
Bowen and Brinlee have an older brother, Greyson- when we aren’t cheering one of them on, we love to travel as a family. We have always enjoyed travel but decided when Bowen was born and diagnosed with a potentially life limiting disease that we were going to live BIG no matter what that meant for us. In the last two years we have had the opportunity ski twice, visit family in Florida and Idaho, go to Give Kids the World for Brinlee’s amazing Wish Trip, spend a week in Mexico, and camp in our RV “Gary” many places around Texas. We are excited to see where 2025 will take us!
We joined our first Great Strides Walk in 2016 when Bowen was 6 months old. Great Strides, The Cystic Fibrosis Foundation, and the DFW Cystic Fibrosis community gave us such comfort and hope in a time full of unknown, shock and fear. We have seen the face of CF change so much in the 9 years that it has so closely been a part of our lives, and truly believe it is becoming one of the greatest medical miracles to be told. CFTR modulators such as Trikafta, and even newer medications in the pipeline, have transformed the lives of so many with CF. Fundraising and advocating for The Cystic Fibrosis Foundation and Great Strides Walk has been so important to us, as we have seen firsthand what a monumental difference they have made. Having a beautiful, seemingly healthy baby and being told their median survival rate is in their 30s or 40s is something we have known we would do anything we could to help prevent another family from hearing. We believe fundraising and teaching about CF and all the hope for a bright future, can do just that. While these medications are life changing and have very much changed the outcome for many- they are not a cure, and the fight will never be over for us until we have one.
We hope and pray that 2025 is full of further advancements and success in the CF story…. “Until Its Done”
Bowen was diagnosed with Cystic Fibrosis from the newborn screening at 3 weeks old, Brinlee was diagnosed in utero… for both this has meant years of multiple daily medications, nebulized breathing treatments, vest therapy, quarterly clinic visits and many annual tests, pokes and scans from their long list of doctors that have now become more like family to us.
Bowen and Brinlee are full of action and excitement, Bowen loves all things sports. He plays soccer and basketball and can tell you the name, team and number of just about any player in the NFL. Brinlee is a total fashionista, she loves art and all things girly. She most recently started hip hop dance classes, after she decided ballet wasn’t quite free spirited enough for her 😊
Bowen and Brinlee have an older brother, Greyson- when we aren’t cheering one of them on, we love to travel as a family. We have always enjoyed travel but decided when Bowen was born and diagnosed with a potentially life limiting disease that we were going to live BIG no matter what that meant for us. In the last two years we have had the opportunity ski twice, visit family in Florida and Idaho, go to Give Kids the World for Brinlee’s amazing Wish Trip, spend a week in Mexico, and camp in our RV “Gary” many places around Texas. We are excited to see where 2025 will take us!
We joined our first Great Strides Walk in 2016 when Bowen was 6 months old. Great Strides, The Cystic Fibrosis Foundation, and the DFW Cystic Fibrosis community gave us such comfort and hope in a time full of unknown, shock and fear. We have seen the face of CF change so much in the 9 years that it has so closely been a part of our lives, and truly believe it is becoming one of the greatest medical miracles to be told. CFTR modulators such as Trikafta, and even newer medications in the pipeline, have transformed the lives of so many with CF. Fundraising and advocating for The Cystic Fibrosis Foundation and Great Strides Walk has been so important to us, as we have seen firsthand what a monumental difference they have made. Having a beautiful, seemingly healthy baby and being told their median survival rate is in their 30s or 40s is something we have known we would do anything we could to help prevent another family from hearing. We believe fundraising and teaching about CF and all the hope for a bright future, can do just that. While these medications are life changing and have very much changed the outcome for many- they are not a cure, and the fight will never be over for us until we have one.
We hope and pray that 2025 is full of further advancements and success in the CF story…. “Until Its Done”
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