Cystic Fibrosis has been a term that I have heard my entire life. It was not until last July that I met this disease face to face. Huddled around her incubator, I met Claire for the first time. Her parents, two of my best friends on earth, were facing a horrifying reality. Their precious newborn was being tested for Cystic Fibrosis. We were so excited to welcome their first-born into the world, but at the same time so frightened and sad that she was not born as healthy as we had hoped. She had been born with a blocked bowel, and was having some difficulty gaining weight. Seeing as how this usually points to the disease they decided to start testing. Weeks later the results were back and they were positive for CF.
As friends and family prayed for them, Dave and Lisa Kilber began the journey of parenthood caring for a child with CF. Medications and treatment started immediately. As the weeks grew on Claire began to gain weight and seemed to get healthier each day. With dedication and commitment to daily breathing treatments, medications with each feeding and keeping Claire home for the first 10 months of her life Claire’ parents managed to keep her healthy. She is now a chubby little girl who crawls, plays and is starting to say her first words.
It wasn’t until I new someone with CF that I really understood what the disease is and how it affects those who have it. Cystic Fibrosis is a genetic disease. It affects the way salt is processed in the body. This causes thick sticky mucus throughout the body affecting the lungs and the pancreas. The mucus in the lungs allows harmful bacteria to colonize causing breathing issues. The pancreas can not produce the enzymes required to digest food due to the mucus and makes it hard for people with CF to gain weight.
Although 1 in 30 people are carriers of CF it affects 1 in 3,000 because both parents have to be carriers of the gene to pass it on. Sixty years ago, most children diagnoses with CF died before they could attend school. Today thanks to research and development of treatments and medications most CF patients live into their thirties.
Because of the Cystic Fibrosis Foundation, the Kiblers, and families nationwide like them, are able to have access to these medications and treatments. The research that the foundation has recently done has led to a release of a drug that helps cure the cause of the disease and not just treat the symptoms as they have been able to do so far. This new drug, Kalydeco, is effective on 4% of those with CF. Unfortunately, Claire is not in that 4%. But, hopefully, soon a drug like this will be developed to treat all Cystic Fibrosis patients and cure this disease completely.
To fund research each year the Cystic Fibrosis Foundation sponsors fundraising national walks. The Great Strides walks are the most successful fundraisers for the foundation. This year, as many years before, there is a Great Strides walk in our own back yard. The local walk will be held on Sunday May 20th at Hardesty Park in Akron. Claire’s friends and family will be walking on her behalf. Her team name is Claire’s Crusaders. Donations can be made to Claire’s team by visiting http://www.cff.org/Great_Strides/clairekibler.
