A Rare Pair

Our Great Strides Story

Kylea was diagnosed with CF December 2, 2008 at three months old. At the time of her diagnosis the life expectancy was just 35. 

Over the past 15 years, we have made it our priority to educate ourselves and live life to the fullest. It's been my goal for Kylea not to ever feel as though she can't because of CF and let me tell you she lets nothing get in her way!  From dance and gymnastics, karate, t-ball, horseback riding, paddle boarding in Mexico and most recently representing Texas Children's Hospital as the Children's Miracle Network champion. 

Kylea truly is an inspiration!

Reba was diagnosed with CF in July 2023 at 38 years old. Reba had a pretty healthy childhood that only included occasional GI trouble. Diagnosed with "allergy induced asthma" in her teens as well as chronic sinusitis. Over the years, Reba's asthma began to worsen and she began to be diagnosed with bronchitis at least once a year that would lead to a cough that would last 3-4 months. No explanations were given and no attempts to understand the cause were made.  In 2011, a few years after Kylea's diagnosis, Reba began to learn more about CF and asked her family doctor to test her for CF and he agreed.  A sweat chloride test was completed and the results were negative for CF, still no answers.  The chronic lung problems persisted and she continued to be prescribed steroids, inhalers and antibiotics, none of which helped. 

After moving to Houston in 2017 and being in a warmer climate, the annual bronchitis subsided and breathing improved.

Reba was diagnosed with COVID 19 in November 2020, COVID wrecked havoc on her lungs with double pneumonia, a cough and lung scarring that were present for two years. Why was a seemingly healthy person so sick? She knew something was off and this reignited her quest to find answers.

During a post COVID 19 follow-up visit in 2022, Reba asked her pulmonologist to test her for CF. This time the standard genetic panel blood test was completed.  The test results confirmed the single copy of DF508, on a carrier, nothing new here. No answers.

In 2023, after continuing to have a mild baseline cough, shortness of breath not improved after trying four different inhalers, steroids and antibiotics, she once again probed on genetic testing for CF because she that many POC diagnosed late are frequently not diagnosed via the standard methods.  Reba presented the test code to the genetic sequencing to her pulmonologist and the test was completed.  Seven weeks later the results were in, Reba had a second mutation, a rare mutation. She was diagnosed with Cystic Fibrosis.

The last ten months have been a whirlwind of emotions, lifestyle changes and acceptance.

Our family is eternally grateful for the work of the CFF, the volunteers and all of those who donate each day, each, month, each year to help add tomorrow's, because of your dedication and the brilliant researchers, the median life expectancy is now mid-50's. 

Until it's done.