Dear Family and Friends,
We will join Ginger, Alex, King, and Emma Virginia on April 28, 2019 at Baylor School for the Chattanooga Great Strides Walk. This will be our seventh year to walk in support of the Cystic Fibrosis Foundation (CFF).
King, now seven, is a happy child who loves his sister, school, and his pets. He recently stated that his favorite activities are “reading, writing, and working a few math equations”. He is beginning to understand the BUZZ in the Cystic Fibrosis (CF) Community. A precision medication that would correct King’s mutation could be available in the next two years. When asked how he feels about this, he replied “NICE”!!
It has been a particularly difficult year for King. He and Ginger spent 28 days in Monroe Carell Jr. Children’s Hospital at Vanderbilt to undergo yet another sinus surgery, to treat pneumonia induced lung exacerbations, and a colon blockage.
King requires 2.5 hours of respiratory therapy, daily. He takes 50 pills per day. He receives 10-hour nightly feedings and a daily bolus feeding at school through his g-tube; regardless, weight gain is still hard to maintain. The CFF states, “People with cystic fibrosis need extra calories for several reasons. Although they take pancreatic enzymes, e.g., Creon, they still are not able to efficiently use the energy they consume because the enzymes cannot break down everything they eat or correct their problems with absorbing nutrients. Fighting infections and coughing on a regular basis also burns extra calories. Maintaining a healthy weight and sometimes increasing it is key to fighting infection and keeping their lungs and body strong”. King now exhibits lung, sinus, and digestive tract issues; he requires the care of a pulmonologist, an ENT, a GI specialist, a respiratory therapist, a mental health coordinator, and a dietician.
Now, back to the BUZZ!! In what researchers are calling a breakthrough, two trials have found that either of two triple-combination drug therapies/correctors could potentially benefit 90 percent of the people with CF, including King. These therapies are now in a phase three trial and are improving lung function in CF patients by correcting the defective gene at the cellular level.
Without support, such as yours, these technological breakthroughs would not have been possible. The CFF is committed to changing the course of this devastating disease, investing heavily in science, drug development, and care centers. Please consider donating to the Cystic Fibrosis Foundation and Kenneth King’s Believers today, either by check or online at our link http://fightcf.cff.org/goto/sue-edking. Your gift is 100% tax-deductible; 90% goes to life-saving research. Our personal goal is $10,000. We believe more strongly than ever that CF=CURE FOUND!! Thank you for your donation. A self-addressed and stamped envelope is enclosed.