Team Hall’n for CF did their own “walk” this year. J The risk of cross-infection kept us away from the CFF sponsored Great Strides walk, but we are still supporters of the Cystic Fibrosis Foundation and we believe in their dedication to finding a cure for cystic fibrosis. So this year, the Hall’s headed over to Lake Flanagan on a beautiful May day to enjoy some family time in honor and support of the CFF’s fundraising efforts.
As most of you know, our daughter Alexa was diagnosed with cystic fibrosis right after starting kindergarten at age 6. Three short months later, our newborn daughter Presley was born with this life-threatening, genetic disease as well, and spent seven weeks in the NICU before being released home. It was hands-down our most difficult year thus far, as we learned about the disease, worried about their futures and made plans on how to keep them healthy until a cure is found.
That was nearly eight years ago. We are still learning about the disease and how it manifests in the girls in different ways. Alexa’s pulmonary function remains strong, however, we are watchful of the impact CF is having on her liver. Presley’s pulmonary function is good as well, but we must always keep a watchful eye on the impact CF has on her GI tract. Although the worry never completely goes away, our family has learned to focus on today – not on CF – because even though their days are filled with CF, they are so much more than CF.
Alexa will be 14 in a few weeks and will start 8th grade in the fall. She competes in basketball and swim team, works hard at school and gets wonderful grades, enjoys cooking club and band and is volunteering at a summer camp and a local library. CF is just her mandatory side-gig.
Presley is seven years old and going into 2nd grade. Thankfully, she loves to be active and enjoys basketball, volleyball and swim team. She loves school, art, reading and playing with friends. CF does not consume her days, but it’s just not something she can ever ignore or leave behind. It is her pesky side-kick.
Both girls are still taking Orkambi, a drug developed through funding from the CFF, which helps their bodies at the cellular level to do what they are supposed to be doing. However, Orkambi does not provide the benefits that the next generation drugs are showing in clinical trials. If all goes well, the next exciting CF drug may come to market by early 2020. In clinical trials, it is showing lung function improvement in the double digits and decreasing sweat chloride levels to near normal. (Elevated sweat chloride is the diagnostic test for CF). We believe this could be a game changer for them.
So while we weren’t at Great Strides, we continue to believe that the Cystic Fibrosis Foundation is the key to curing CF. We will still donate to the CFF to support continued research and we are still asking you to consider donating so that hopefully, one day, Alexa can quit her side-gig and Presley can ditch her pesky side-kick.
Please consider donating by clicking on the "Donate to Me" button above or you may mail a check made payable to the Cystic Fibrosis Foundation to Steve & Wendy Hall at 16511 Bauman Circle, Omaha, NE 68116.
Many thanks for your consideration and concern for our girls,
Steve & Wendy Hall