Individuals who are LIVING, BREATHING and SUCCEEDING as Caregivers are true warriors to all of us with cystic fibrosis.
Parents, siblings, extended family members and good friends all offer encouragement, a smile and support just by being there. Caregivers also include the health care team—the doctor, nurse coordinator, respiratory therapist, social worker and dietician—that heals, nurtures and educates people with CF.
If you are one of the many people LIVING, BREATHING and SUCCEEDING with CF, we want to hear from you! Show the world what you have done!
Click here to submit your story. All applicants will receive a CLUB CF t-shirt.
I am both grandmother and primary caregiver for two beautiful children with cystic fibrosis. Raising my grandchildren – Elijah (7) and Renae (5) – has been a major adjustment for me, especially after raising my own four healthy children.
Every morning, Elijah and Renae wake up, take their medication, eat breakfast, and head to school. They both go to the school nurse during the day to take their enzymes and to do their breathing treatments. Once they arrive home, they take enzymes with their snacks and do treatments again before bed. Elijah also has a nurse come over to help set up his feeding tube before he goes to sleep.
Both my grandchildren play sports – Elijah likes baseball and Renae is in gymnastics – and both of them like to swim. I see an obvious difference in their health when they are active. It amazes me daily how they go about their days as though nothing is wrong and live every day with joy.
My favorite color is blue.
My favorite food is Chinese.
My favorite holiday is Christmas.
I love to watch the Hallmark and Discovery Channels.
If I could give other caregivers advice, it would be to remain patient and advocate for your child with CF. Learn as much as you can and talk to other families affected by the disease.
“Some people wait their whole lives to meet their heroes, I gave birth to mine.”
I am a CF mom living in upstate New York. I am a single mom with three boys, two of whom have CF. Zachary, the oldest at 16, has CF along with his younger brother Alex, who is 13. My youngest Tyler does not have CF. They all play a bunch of sports at their school. Zachary plays varsity soccer at his high school. I am immensely proud of all of them.
Zachary was diagnosed at 5½ months, while Alex was diagnosed at birth. By the time I had Alex, we had the hang of the CF routine, but like any CF family it presents its challenges. Typically, my kids won’t do their first treatment session in the morning, so we can get to school on time. They will do their meds once they get home from school and then again before bed. As far as compliancy, I try to keep as strict a schedule as possible; we take care of everything we need to.
I am a firm believer that exercise has kept my kids out of the hospital. The only time they were every hospitalized was around when they were diagnosed. I think it also helps my kids feel normal. Really, though, it has been difficult for the kids to understand that CF is totally apart of them. They really feel it when they want to go to sleepovers, visit family or on vacation – things like that. With that being said, I want them, and anyone else with CF, to know that you can control CF, don’t let it control you.
We are a big sports family, I actually help coach some of my sons’ teams as well!
CF has brought my sons closer together.
I feel like any award my boys win is a huge accomplishment, Alex was just awarded defensive player of the year from his soccer team.
My favorite color is green.
I love prime rib.
Thanksgiving is my favorite holiday.
Green Mile is my favorite movie.
My boys are Bills fans, so am I.
Hi! My name is Jarrod McKee, and I am a CF Dad to my one-year-old son Carson. My first child was born symptomless and was not a carrier of the CF gene – so Carson’s diagnosis came as a complete surprise to my wife and me.
Our first month with Carson was so tough. We had no idea what to expect – and the experience was completely different than with our first child. We decided to be as proactive as possible by raising money for the cause and by enrolling Carson in observation trials.
The McKee family has very structured days. We wake up early for treatments before the babysitter arrives, and when Carson is sick, we completely rearrange our work schedules to be with him. My wife and I make sure that we, as a family, are compliant with treatments and nutrition as well as our own exercise so we can set a good example.
The best thing about Carson is that he has a big personality – always happy, laughing, and smiling. We know that he has a great life ahead of him, and we are going to do everything in our power to make it possible.
“It is okay to have bad day – always remember that tomorrow is a chance to start fresh and be positive.”
I am the mother and caregiver of three young boys, Joshua, Matthew, and Phillip, who has cystic fibrosis. My husband and I were fortunate enough to find out that Phillip had the disease while I was still pregnant with him. We were able to research CF and begin treatments as soon as he was born. My other two sons, Joshua and Matthew, understand as much as they can at their ages. They accompany Phillip and me to his clinic visits, play with him while he does his treatments, and treat him as they treat each other. I homeschool my two eldest boys because Joshua has a sensory disorder that inhibits his ability to excel in a filled classroom. Phillip is currently attending church preschool, but I will most likely homeschool him as well.
My husband and I encourage all three of our boys to participate in sports and outdoor activities. I help coach my sons’ t-ball team, which Phillip will start as soon as he is old enough. The boys also love swimming – we are putting in a salt water pool – and karate.
As for me, I am a full-time hospital administrator on top of my caregiver responsibilities, which has forced me to stay extremely organized. My mother lives with us to help with Phillip’s care and I am fortunate enough to have a flexible schedule. I have always and will always make an effort to research any possible CF treatments for Phillip, no matter how new or different, and help him learn which ones work the best for his situation.
Being a caregiver is never easy. You have to stay strong even when difficulties start to take a toll on you and remain patient through the ever-changing treatments of the disease. You also have to want to be educated – you cannot consider it a burden, but a blessing to have as much information available as there is today. I would tell anyone who has recently become a caregiver, or one who is struggling, to talk to CF patients of all ages, to learn from doctors and CF clinics, to always take things as they come, and no matter how hard it is, do not put your CF patient in a bubble. Encourage him or her to stay healthy and compliant, but allow for as normal a life as possible.
Musical Artist: Matchbox 20
Team: Dallas Cowboys
If I could go anywhere in the world, I would visit… Italy.
My family and friends would describe me as… determined.
My role models are… any older CF patients who are dedicating their lives to help the younger CF generation.
“Life is not measured by the number of breaths we take, but by the moments that take our breath away” is a well-known reflection about life that has resonated with me for years - since my younger sister, Katie, was diagnosed with cystic fibrosis. It inspires me in my every day life and comforts me when my concerns for Katie become overwhelming.
When I was 15, my little sister Katie was diagnosed with cystic fibrosis at the age of 2 ½. Our parents, from the start, have always made an effort to hide their worries about the magnitude of this disease from their children. They do not repeat statistics or life expectancies, and have always made sure that Katie does not feel different or out of place. Because I was older at the time of the diagnosis, I had access to online information, which led to high anxiety and protectiveness of my sister. While the first few years were difficult, eventually cystic fibrosis became what my family knew – it became our “normal.”
I lived away from my family for several years, including a time when Katie had to be hospitalized. In spite of this, I have always tried to be the best support system for my sister and for my family that I could possibly be – whether it was having sleepovers with Katie and helping her with medicines and treatments or just calling to check in. I am constantly in awe of my sister’s strength and positivity and try to be there for the times when she needs someone to simply listen.
Katie started running with our uncle in order to increase her lung capacity and improve her health, and in a show of support – even though I have never been athletic – I decided to start running as well in 2004. I am proud to say that, since then, running has become one of my favorite hobbies, a way that I relate to Katie. Our combined hobby led me to the idea of “Run for Roses,” an inaugural event for my family’s foundation – The Rose Foundation. Run for Roses was a 65-day, 1,000 mile run from St. Louis to New York City that I embarked upon to raise money and awareness for cystic fibrosis and to show support of my sister. My experience on this run exceeded any of my expectations and allowed me to meet so many amazing people and families along the way. Along with my run, I blogged, ran with other people affected by cystic fibrosis, and helped people feel just a little more connected. I became a part of and was sponsored by the “Got Milk? Team Refuel” campaign. I even had a role in inspiring one woman to bike cross-country to raise money for transplants. The Run for Roses gave me hope – hope for my sister, my family, and all those affected by the disease.
I am proud to say that my family will continue to raise money for cystic fibrosis research through The Run Foundation, and have many plans in the St. Louis area. If I could give anyone affected by cystic fibrosis advice, it would be this: It is not the end of the world. The disease is manageable and there are breakthroughs being made every day. Keep your hope and always remember to run, run, run!
My role model is… my sister Katie, she inspires me to try new things.
If you could visit anywhere in the world… Italy.
If your family and friends had to choose one word to describe you… passionate.
Favorite color… purple
Favorite food… Grandma’s spaghetti.
Favorite holiday… St. Patrick’s Day.
Favorite movie… When Harry Met Sally
Favorite musical artist… Alicia Keys
Favorite sports… running
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