Today, March 23, we went on a family hike from Point Park to Sunset Rock. This day is drastically different from the 28 days that King spent in the hospital recently. We are grateful to be on the other side of that time, but King continues to struggle with a variety of issues and his quality of life is being impacted.
Take some time to think about that concept-quality of life. King has learned so much about the gift of a "good day," the meaning of "staminer," which is stamina in King language, and "getting to go to school" with his buddies. These are things that most children, and even adults, take for granted. Our whole family has learned the importance of living in the moment, and so today we are grateful for legs and lungs that took us hiking.
Being grateful for today does not mean that we are not looking to the future for better quality of life, more controlled cystic fibrosis, and eventually a cure. It's quite the opposite, in fact. We are living in a time where we can actually say that there is EVIDENCE-shown in a clincial trial-that a potential new drug will go to the root cause of King's disease and halt the damage to his body.
If you have been following our story since King's diagnosis at birth, you know that we have been riding a wave of hope for this very moment in time! The moment is here and we have countless people to thank. Dollar by dollar, volunteer hour by volunteer hour, study by study, people from all over have pulled together to get us to this place. Together, we did this, and this year we have the chance to get even closer to the finish line.
Imagine the wrinkles of King's hand cradling the pill
that will change his life.
We want to expedite the research and development that will, one day, allow King to breathe easier and stop the devastation to his body.
Continued support of the Cystic Fibrosis Foundation is vital to King, and so many others,
living a life full of everyday dreams.
Please know that your donations go straight to the heart of the matter. CFF has a strong record of investing raised dollars back into research which has created a robust drug development pipeline including drugs in these areas: anti-infective, anti-inflammatory, nutritional/GI, mucociliary clearance, many of which King takes on a daily basis. They are literally sustaining his life by clearing his lungs and allowing him to digest and absorb nutrients.
In the Meantime?
King is living a productive life full of the things 7-year-old little boys don't often deal with: nearly 50 pills a day, 3 inhaled medications, hours of respiratory therapy a day, changing his own feeding tube!!, nightly tube feedings hooked up to a machine that runs for 8 hours, daily tube feedings at snack time, numerous sinus suregeries, bowel blockages, hospital stays, and the knowledge that he must do all these things to stay well.
Our National Family Team, Kenneth King’s Believers, will take part in Great Strides at our home walk in Chattanooga on April 28. We also want to have walkers across the country to honor the promise and hope for what is to come. There are many ways in which you can support our efforts! We would love for you to join our team physically (at any location) or VIRTUALLY. Donations are invested wisely to go toward patient assistance, patient care, and research.
Some people living with cystic fibrosis do not yet have a treatment in clincial trial that is promising. It is important to note that as we near the finish line and get closer to better treatments for King, we look forward to reaching across that line and holding onto them until we can ALL celebrate together. #UntilItsDone
Money buys science and science saves lives. Hope gives our family faith in tomorrow.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.