Since then, the Birnbaums have been actively raising money to find a cure for CF, and the Lookout Mountain community has been a big help. This year, Ginger has written a letter, published in entirety below, asking for help and community participation. You can join the Kenneth King's Believers (KKB) team during the Great Strides Walk for the Cystic Fibrosis Foundation on April 17 or make a financial contribution to help find a cure for CF.
Dear Friends and Family,
I hope that you are having a great week! It is my fifth year of coming to friends, family, and community for help in the fight against cystic fibrosis. THANK YOU, THANK YOU, THANK YOU for continuing to support us in our efforts to make CF stand for Cure Found! Every day, every month, every year we continue with the mission of Kenneth King's Believers. We know that it takes the hands and helping hearts of many to reach our goal. CF does not stop, but neither do we. Our commitment to raising awareness and funding has never been stronger. We want King to have a long life, and we want that life to be full of all of the good stuff!
Kenneth "King" Birnbaum is a bright and happy four-year-old little boy. He is a son, brother to Emma Virginia, grandson, nephew, cousin, friend, playmate and neighbor. He is a lover of Batman and Legos. He is also living with cystic fibrosis.
This year, King started nursery school! Due to cycles of sickness and hospitalizations, we were not comfortable putting him in groups of children previously. It has been the most precious experience to see him bond with other children, learn their names and to watch him run with free abandon on the playground. As my parents would say, "He's exploding!" They are right: we can see the thoughts and emotions firing rapidly in his precious body.
This letter is my personal request for you to join me in the fight against CF, so I want to share some of my personal experience in raising a little boy living with CF. It is my deepest desire that I can, one day, hand my son a pill that will change his life! One thing that I have not spoken widely about is the emotional roller coaster, the ups and downs, the positive and the negative of CF. It is real, and it is hard.
This year, although largely positive, has been the most emotional for me. Maybe it is that I was finally able to step back long enough to take it all in? I will never know, but I can tell you that CF is part of my life at every level. This CF Family is my family. I hurt with them when their children are ill, I cry with the families who have lost someone, I cheer with the scientists that make grand discoveries, I applaud legislative efforts that work more closely with our mission, I stand in amazement at the Foundation staff who work tirelessly toward a cure, and I am in awe of the innumerable volunteers who have made CF their passion. On top of that, I watch my own son live with this disease. I would never say that there is not beauty in CF. I can't separate the disease from the wonder that is King, and I would not change a hair on his head. Like so many parents, I just want him to have the best life possible. I believe a cure for CF is possible!
We continue to raise awareness and funding to move toward a "daily cure" for King!
And where does this money go, really?
In the past year, Orkambi was approved for people living with CF who have two copies of the F508Del mutation. This is excellent news because so many people in my CF Family are able to be treated with this drug, and it is making a big difference in their lives. n fact, it has been beautiful for me to hear my friends tell of the first time they gave their child the drug that could ultimately save their lives. King still awaits a time when he can take a pill to change his life. His mutations (F508Del and W1282X) are more difficult to correct, and this puts him in 5 percent of CF patients that we know will be more difficult to treat. The Cystic Fibrosis Foundation and scientists everywhere are working feverishly to treat 100 percent of patients, and for that we are forever grateful!
Due to the commitment of CFF and subsequent drug discoveries, King takes lots of other medications to treat the symptoms of his disease. He does 2 hours of respiratory therapy daily, unless he is acutely ill and then that is doubled. He inhales medications that help to thin the mucus in his lungs. He takes medications to aid in digestion since his pancreas does not work effectively. He takes medications to keep MRSA at bay. He takes medications to keep his sinuses clear of polyps. Even as he sleeps, King is fed via feeding tube to optimize calorie intake. King works hard to stay healthy!
And how will we get there?
In the last four years, through grassroots efforts, National Family Team KKB has raised over $130,000 with the help of team leaders across the country. Our friends and family shared the message of the Cystic Fibrosis Foundation and King's story. In return, their friends and family responded with overwhelming support! These leaders, their teams, and their friends have given us hope as we continue the fight against CF.
In 2016, our fifth year, we hope that you will make the commitment to join us at the Chattanooga walk on Sunday, April 17 and/or make a donation to our team! King's big sister, Emma Virginia, also has a team this year for children. The Biggest Stars is her way of working toward a cure for her brother. Let us know if your child would like to join this team!
Do you believe in a cure? Join Team KKB by signing up to walk with us on Sunday, April 17 or by making a donation!
We have lots of fun events coming up in Chattanooga for Team KKB. Follow us on Facebook at Kenneth King's Believers to keep up!
With Love and Hope,