TEAM STEPS FOR SUMMER!
We are kicking off our 2023 mission to raise awareness and funds for the Cystic Fibrosis Foundation! Mark JUNE 3rd on your calendars! We hope to gather and see many of our Team Steps For Summer warriors who can join us again for Great Strides!
If you are new to our crusade, welcome to team Steps for Summer! You are invited to be a part of a passionate group of family, friends, and loved ones who are helping add tomorrows to all of those with this Cystic Fibrosis. What brings you all a little closer to this event is knowing our family and our 13 year old (TEENAGE!) daughter, Summer Sue, who was born with Cystic Fibrosis.
When Summer was diagnosed at birth, Michael and I were shocked and completely unaware of what Cystic Fibrosis was. We struggled with what "CF" meant for our precious baby girl's health and overall future. The Cystic Fibrosis Foundation and the CF community gave us hope. As a matter of fact, Sacred Heart here in Spokane is recognized for having one of the best CF doctors in the entire Pacific Northwest, Dr. Michael McCarthy. He met us immediately in the NICU and after three surgeries at birth, he represented an calm, yet fierce warrior who would help guide us through this new disease and become an integral caretaker - and like family. With him, and the CF Clinic by our side, we never felt alone.
Like all parents, we wanted Summer to have every opportunity in life. We instilled self care and accountability from a very young age and she soon talked about "her business" - and that is how she defined her responsibilty for her daily breathing treatments, morning and night, as well as taking her pancreatic enzymes with every meal and snack. Summer is old enough to know that "she as CF" - yet she also knows that this is just a part of her world. All of us in life have "something" that we must accept and manage - whether that is relatable to ourselves or for a dear loved one. For those of you who know Summer, she has empathy for others, can bring an immediate smile to your face, and is also has spirit of a warrior who is committed to taking care of her body - and just being happy. She is responsible, loves school and learning, and has found a love for skiing and softball. She continues to teach us that each day is a gift and to be humbled by the simplicities of life, including good health.
Had Summer been born two generations earlier, her health would not be what it is today. Through the work of the Foundation, remarkable progress is being made in research and drug discovery that are changing the course of this disease. Children born with CF 50 years ago did not live past 5 years old; today, the average life expectancy for someone with CF is 46 years old.
Summer has been fortunate with her routine check-ups and overall condition of health and care. COVID-19 has been scary, yet our daily habits and focus on overall prevention and health contributed significantly to our day to day concerns surrounding this pandemic. Also, despite her daily challenges with the treatment of CF, and frequent psuedomonas cultures, she has been able to stay healthy for the most part. She has two copies of the Delta F508 mutated gene, which is the most common form of CF. However, each individual, who has even the most common mutation, has a varying form of the disease. No one's "CF" is the same. Summer's health has been a blessing. Yet, as her parents, we know that this could literally change at any moment. Even the common cold can cause harm to her lungs and heightened, focused care sometimes will not be enough to protect her from harmful bacteria and potential damage to her lungs. She inhales hypertonic saline 2x a day and that, we believe, has been an amazing element of her overall health.
THERE IS NO CURE FOR CYSTIC FIBROSIS. However, tomorrows are being added through the CF Foundation's funds that raised by family and friends like you. The CF Foundation does not receive governmental grants since only 30,000 Americans have this disease. Funds raised are attributable to bringing such drugs as Kaydeco, Orkambi, and most recently, Symdeko.
These drugs are to be CELEBRATED! Although they are not a cure, the drugs mentioned above address the underlying cause of CF and are classified as CFTR modulators. What does that mean? It means that these drugs target the disease at the cellular level to alter the composition of the CFTR protein that is "mutated" in someone with CF. Science continues to target the disease and research is underway that may be unprecedented for this disease and other diseases that work to actually target the disease at the "gene" level. That's right - can you imagine targeting a disease at the genetic level? This represents hope that "CF" could one day stand for CURE FOUND!
Thank you to our team mates who have been with us from the beginning of this journey - those here in Spokane and those who are distant as well! Thank you to those team mates who are new to our crusade! Summer has CF, yet through this disease, we believe that she has something huge to share with others . . . the gifts of joy, humility, fight, and remembering that life is meant to be lived and oh so cherished! Every breath is truly a blessing.
All the best
Michael, Shanann, Reiley, and Summer Sue
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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.
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