From My Hearts to Yours,
Recently our family, Emma Virginia, King, Alex, and I, went on a hike from Point Park to Sunset Rock here on Lookout Mountain. It was a carefree day full of wonder and laughter; nothing extraordinary happened, but it was full of special moments. This day was drastically different from the 28 days that King spent in the hospital over Thanksgiving and Christmas. There the carefree moments did not come as easily, but we still made special memories. We are grateful to be home, 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 Kingese, and "getting" to go to school with his buddies. These are things that most children, and even adults, take for granted.
Being grateful for today does not mean that we have changed our laser focus on a brighter future: for improved quality of life, for better controlled cystic fibrosis, and eventually, a cure. There is clinical EVIDENCE that a potential new drug (in phase III trials) being developed by Vertex Pharmaceuticals will go to the root cause of King's disease and halt the damage to his body. This drug, a triple combination therapy, is expected to "effectively" treat King and 90% of the CF population. We are truly racing against time to get this drug into his hands! The damage that has already been done to his lungs and pancreas cannot be reversed, so we are working to keep him as healthy as possible in the meantime.
As remarkable as this drug could be for King, there are still 10% of people living with CF that will not benefit from a treatment like this. Their disease can not be managed on a daily basis by correcting the mutation at the cellular level; only a cure can save them. It is that cure which we all desire. We are all in, #untilitsdone! In addition to finding a cure for all, there is still more work to be done in regard to the Lung Transplant Initiative, infectious disease portfolio, anti-inflammatory pipeline, and other symptomatic therapies. CF is relentless, but so are we.
King is a busy little boy gearing up for Roxaboxen at school, riding his bike, waiting on the blueberries to bloom at Nonie and Papa's house, playing Zelda with his Daddy, picking on his Mama, and chasing his Sissy around. He also happens to have to work really hard at life. Every day King takes nearly 50 pills, 3 inhaled medications, snack time tube feedings, hours of respiratory therapy, nightly tube feedings hooked up to a machine that runs for 8 hours. This is in addition to changing his own feeding tube!!, numerous sinus surgeries, bowel blockages, hospitalizations, and the knowledge that he must do all these things, consistently, to stay well. The miraculous part is that he always finds time for a carefree moment.
If you have been following our story since King's diagnosis at birth, you know that we started this journey on a wave of hope. The first drug created to treat the root cause of CF was approved one month after King's diagnosis! That drug worked for a smaller number of CF patients, but it gave us hope that King's time would come. The moment is here and there are countless people to thank. Dollar by dollar, volunteer hour by volunteer hour, study by study, countless people have gotten us to this place. Together, we did this, and this year we have the chance to get even closer to the finish line.
Imagine King's hands cradling the pill that will change his life.
CFF has a strong record of investing donations straight into research. This is how the triple combination that we breathlessly await came to be. Following this model of venture philanthropy, CFF has created a robust drug development pipeline including drugs in these areas: anti-infective, anti-inflammatory, nutritional/GI, mucociliary clearance. These drugs, many of which King takes on a daily basis, are literally sustaining his life by clearing his lungs and allowing him to digest and absorb nutrients.
Can you Make a Difference?
YES, of course you can! Our National Family Team, Kenneth King's Believers, will be at Chattanooga Great Strides on Sunday, April 28. You can join us physically OR virtually. Go to fightcf.cff.org/goto/CHAKKB to join the team and/or make a donation.
We can hardly believe that King may soon have a treatment that will change his life. Thank you for celebrating all of these advancements with our family.
Emma Virginia and King have created their own teams for younger Team KKB supporters. You can read their personal stories and what Great Strides means to them at the links below. If you have children that would like to join their teams physically or virtually please let us know or join online!