First, let us say hello and thank you for taking the time to learn about Alabama Friends of Cystic Fibrosis. We are the McCain Family: Brent, Jenn, and four amazing sons, three of whom have cystic fibrosis. Our youngest sons, Justin, Jeremy, and Joseph, are our CF patients. However, our oldest son, Jake, is not even a carrier. CF is a genetic disorder caused by a defective gene passed from two unknowing parents. Because CF is hereditary, no one can “catch” it from a patient. CF is only diagnosed through newborn screening, genetic testing, or a sweat test. There are also many, many mutations of the CF gene which is why continued research is paramount.
As McCain’s, we are a typical family of boys: rambunctious, energetic, and non-stop action. Physical activities such as running, swimming, camping, skiing, playing outside, video gaming, and harassing each other are all part of our life mix, but we have a twist in the middle. With CF, each day is met with the challenge to stay healthy.
A daily regimen is followed that helps prevent health issues that could result from CF.
For example, our boys take digestive enzymes because of the thick mucus lining their digestive systems. This mucus inhibits digestion of critical nutrients which promote growth and strong immune systems. Therefore, the boys take enzymes before every meal and snack, no matter how small the meal. In addition, vitamins, inhalants, maintenance antibiotics, and, with current forward strides in advanced research, specialty meds are integral parts of the daily arsenal in fighting the effects of CF. These meds are combined with physical treatments used for airway clearance. With the use of percussion vests or hand treatments, a CF patient literally has to shake the thick mucus loose in order to breathe freely and maintain healthy, germ free lungs. We do breathing therapy twice a day when healthy, but more frequently during times of sickness.
Speaking of sickness, a lifestyle we have adopted is one of heightened awareness of respiratory and digestive illnesses. Flu and stomach bug seasons are prime times when our family avoids confined, public areas. If required to venture into these situations, we wear surgical masks (which always draws attention from onlookers) to reduce our chance of catching these potentially devastating illnesses. Additionally, CF patients must be cautious around other CF patients because of risks associated with cross-contamination.
With all of this said, life as a family with CF gives us a chance to be closer to each other and more involved together as a family. The future is getting brighter for CF patients and their families. A CF patient’s average life expectancy is currently around 47 years. BUT, that is changing thanks to supporters like you. Current meds are changing lives for CF patients by enhancing their quality of life and longevity. Most of these meds are not cures, but simply aids in helping CF patients’ bodies operate more normally. These meds alone have changed the lives of our kids, and we are excited to see what the future holds not only for them, but for other CF patients as well. There is not a “one med fits all” for CF. There are so many mutations that more research and funding are needed so that ALL CF patients can benefit.
Hello from the Ryer family! We want to thank you for your interest in CF and in finding a cure once and for all. Our names are Jonathan & Debbie and our CF journey began when our son Zach was only 4 weeks old.
When Zach was just a month old, he was hospitalized with RSV at our local Children’s Hospital. What started as treatment for a virus quickly turned into a 6-week hospital stay requiring intubation, oxygen, and a full 2 weeks in the pulmonary ICU. During this time, we spoke with our nurses about some concerns we had about our daughter Hope, who was 2 years old at the time. The nurses encouraged us to have Hope tested for CF and, as it turned out, both children tested positive in January 2002.
From that moment, our life changed.
We started homeschooling in 1st grade after we realized just how devastating even a small infection could be. It turned out that something as simple as a cold could put our children in the hospital. Each hospitalization lasts for 2 weeks. During that time the kids undergo a regimen of several IV antibiotics, repeated daily chest PT and many other therapies. The medicine often causes their veins to rupture so they have both had their share of PICC lines.
Today Hope and Zach are in high school and doing great. But with CF, great comes with a price.
They each have to take over 35 pills every single day just to maintain their baseline. They do chest PT twice a day for 30 minutes each time. They do several breathing treatments throughout the day to keep their lungs healthy and are always vigilant about every aspect of leading and maintaining a healthy lifestyle.
Hope is a vibrant young woman who loves horseback riding and gymnastics. She has even competed as a gymnast which was a dream come true in and of itself. Hope has run on our track team for years and has no plans of stopping.
Zach loves to run as well. He plays the drums at our church and hopes to learn karate in the near future. We hope to watch him achieve this dream!
Both of our kids have participated in the Blow Away 5k for several years now. They run to raise money for a cure because they know exactly what it’s like to live with CF. And they believe it is possible to find a cure for kids like them all over the world.
We hope you will help them with this goal and join us in our quest.
The Oare Family: Eric, Linda, Eric (middle), James (left), and Taylor (right)
My husband and I dreamed of a day when we would welcome our baby boy into the world. The moment he arrived we knew something was wrong. After two weeks of losing almost half of his birth weight, Eric was diagnosed with stenosis of the intestines. At three weeks of age, he had surgery to remove the obstruction in his intestines. At four weeks, the diagnosis of cystic fibrosis followed and our fight to be healthy began.
For the last 19 years, Eric’s daily routine has consisted of taking up to twelve different medications, vest therapy/chest compressions and breathing treatments. He also attends quarterly cystic fibrosis clinics where his overall health is monitored.
Eric is now a very active 19-year-old young man entering his sophomore year at the University of Mississippi. He plays tennis for the University’s Club Tennis team, is a member of Young Life and a Provost Scholar. When Eric has time off, you can find him hanging out with friends or on the tennis court.
WE WILL WIN THIS FIGHT!
Hello, We are John and Jo Ellen Ives. Our favorite names are Mema and Papa and we have 5 precious grandchildren, three of which have cystic fibrosis. We want to make a difference through our, “Blow Away 5k”. We work hard all year to make the “Blow Away” the best race ever and make our run a family-friendly event. We love to meet and encourage others.