“You never know how strong you are, until being strong is your only choice.” ~ Bob Marley
On October 16, 2008, I received a phone call that would change my life forever. We learned the devastating news that our two-week-old daughter, Rylan, had an incurable chronic illness. There had been a newborn screening test done in the hospital shortly after her birth, one I’m sure I had to sign off on and probably skimmed right over the life altering words “cystic fibrosis.” I was too busy staring into the eyes of my perfect, chubby cheeked baby to think there could ever be anything wrong with her.
One in every thirty-one Americans are symptomless carriers of the defective cystic fibrosis (CF) gene. My husband and I were, unknowingly, both carriers of this gene. Statistics show that when two CF carriers have a child, there is a one in four chance the baby will have cystic fibrosis. There are only approximately 30,000 people in the United States with CF. Having our daughter, Rylan, was similar to winning the genetic jackpot.
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus. This mucus clogs the lungs and leads to life-threatening lung infections. It can obstruct the pancreas and stop natural enzymes from helping the body break down and absorb food. Cystic fibrosis is a very complex disease and essentially affects every single organ in the body. Because of this mucus, Rylan spends anywhere from 1 1/4 to 2 1/2 hours a day doing breathing treatments. She inhales countless files of medicine each month – some to open up her airways, some to hydrate her airways, and others to finally thin the mucus. And this is if she is “healthy.” A simple cold has the ability to become so much more. Hospital stays are a reality. Cystic fibrosis is progressive, meaning she will never “get better.” The mucus will continue to thicken, her lungs will become damaged, and breathing will become difficult.
In the 1950s, few children with CF lived to attend elementary school. Today, because of the CF Foundation, advances in research and medical treatments have further enhanced and extended life for people with CF. Many people with the disease can now expect to live into their early 40s. Yes, that is a huge advancement. And, yes, I am forever grateful to everyone who has tirelessly worked to get us to the point we are today. But, when I stop and think about the fact there is a real chance her life may be cut short, I want to cry. That loud, ugly, unstoppable cry.
People often comment, “I don’t know how you do it.” The truth is, most days I don’t know how we do it, either. But I do know, as parents, we are all fighting battles. Our battles just look a little different. We battle over breakfast choices, we battle over homework, we battle over messy rooms. And we also battle illnesses.
Cystic fibrosis.
A path I would never have chosen.
But, I would – and always will – choose Rylan. I would choose her, exactly her, again and again. And that is why we stay strong. We don’t have another choice. And to be honest, I wouldn’t have it any other way.
May is Cystic Fibrosis Awareness Month. It’s a tough month for a lot of us CF parents to get through. There are a lot of facts plastered all over social media. Cold, hard facts. Facts that are hard to think about. But, more importantly, there is hope. Spreading awareness gives us all so much hope.
This is such an exciting time in the CF world. There is a drug called Kalydeco that is changing this disease’s path for four percent of the CF population. It is increasing lung function, lowering sweat chloride levels, and helping these patients gain much needed weight. This is the first drug that targets the actual cause of cystic fibrosis instead of just treating its symptoms. Just like insulin to a diabetic, with the proper management and care, Kalydeco can provide a long and healthy life for a CF patient. Unfortunately, Kalydeco targets only 4 percent of the 30,000 people in the U.S. living with cystic fibrosis. Ninety-six percent of us are still waiting for our magic pill. But, obviously the science is there. We just need to keep the funds coming to push those drugs and therapies through the pipeline.
Cystic fibrosis is an orphan disease, meaning there is NO government funding. We rely solely on donations from the public. With 90 cents of every dollar going directly to research and development of these therapies, you can count on your dollar going a very long way. YOU can help rewrite history. YOU can be a part of our miracle.
To make a donation to our team, please visit www.fightcf.cff.org/goto/rylansrenegades.
To view our fundraising video, please visit http://vimeo.com/95673752.
Meet Guest Blogger Teresa Mack
Teresa Mack is a devoted mother, wife, and CF advocate. She spends her days running after her three children, Kohen (8), Rylan (5), and Bennett (2). When she’s not in the car running them from activity to activity, you can find her crafting or brainstorming the next fundraiser. Teresa volunteers much of her time to cystic fibrosis activities and events. She enjoys spending time outdoors at her family’s home in Grimes.
