August 24 2012

Catherine Hopkins

“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.

My favorite…
Color: purple
Food: Italian
Holiday: Christmas
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.

August 04 2012

Sabrina Walker Smith

“I will never give up until the day I stop breathing.”

I have cystic fibrosis. I am a cancer survivor. And I am thankful for every day that I have been given here on this earth. My life has never been what most people would consider “normal.” I was born, raised, and still live in Anchorage, Alaska, a state most people in the United States consider foreign. Because I am one-fourth Tlingit Indian and in spite of my shaky health when I was young, my cystic fibrosis was not diagnosed until I was almost five years old. Surprisingly, my health was not adversely affected by the harsh winters in Alaska – but those winters did affect my ability to exercise regularly and stay active. I was fortunate enough to have a PE teacher for a father who was able to make sure that I was taking the correct medications and getting enough exercise while I was in grade school.

By the time I was in seventh grade, my parents did not have to encourage me to exercise. I made the decision to be a part of cross country, track & field, and cheerleading – all activities that I continued through high school. In high school, I realized that during my off-season, my health slowly declined, so I joined the track club as a way to maintain my health and my lung capacity.

When I was 18, I faced my most difficult obstacle when I was diagnosed with lymphoma and began receiving chemotherapy treatments to battle the cancer. I was dealing with both CF and cancer at the same time and my body wore down. Fortunately, I was able to beat cancer by staying complaint with ALL of my treatments and staying positive. I am happy to say that I am approaching my sixth year of remission.

While I have to constantly remain aware of my health and how my lifestyle affects it, my life is not dictated by my disease. I have become an avid runner and have found that competing in races pushes me to remain active and gives me a sense of accomplishment. My exercise routine varies along with the length of my upcoming race, but I try to run at least 40 miles a week. I take a cross fit class two to three times a week, go swimming  and rock climbing indoors, and plan to try cross-country skiing with my husband this winter.

I am fortunate to have had a wonderful support system throughout my life and I plan to always make them proud, stay healthy, and live the best life I can.

I love to… learn about my culture by reading and volunteering with the Alaskan Native Arts Foundation and I love volunteering and raising money for CF.
My two goals are… to live a long, happy life and to see a cure found for CF.
My favorite:
Color: blue
Food: pizza
Holiday: New Year’s Eve
Movie: Sabrina (with Audrey Hepburn)
Musical group: The Lumineers
Sport: hockey
If I could visit anywhere in the world, I would… travel all over Europe.
My friends and family call me… Breena or B, but my Grandma calls me Bean.
The people closest to me would call me… a survivor.
My role model… is anyone who can make light of a tough situation.
If I could give someone who was just diagnosed with CF some advice, it would be… At first, it will seem like too much to take in, but like anything else, if you give it time and stay positive, you will get through it. And always remember to help yourself by staying active and medically compliant.

August 01 2012

Jonny Simpson

“The only way is up.”

I grew up in Northern England, where we had extremely cold winters and rainy summers, and because of this weather, I was always prone to chest infections. Unfortunately, I had a hard head when I was younger. My family life at home was not ideal and I allowed that to negatively impact the way I dealt with cystic fibrosis. I was always the smaller, weaker child and never felt like I had any control over my future. I rebelled against my disease to feel control, hurting myself in the process.

When I was eighteen years old, I finally realized that if I did not change my life dramatically, I would not live much longer. I forced myself to deal with my issues, to eat healthy, exercise, and becoming medically compliant. I found my passion in the sport of bodybuilding – an activity that not only helps my lungs and weight gain but has also built my confidence and belief in myself.

Cystic fibrosis has given me a unique kind of passion for life, a special appreciation for every achievement I reach, whether big or small. I have been able to channel my insecurities into a sport that benefits both my mental and physical health. I am determined to be the best person I can be and to never rebel against CF again, but to appreciate it as the force behind my current and future successes.

My favorite…
Color is black.
Food is Goldbears.
Movie is Braveheart.
Song is Human Nature by Michael Jackson.
Sport is bodybuilding.
If I could travel anywhere, I would… safari in Africa.
My friends and family would describe me as… driven.
My role model is… Jerry Cahill. He has changed my life in so many ways.
If I could give someone recently diagnosed with cystic fibrosis any advice, it would be… Never give up on your goals or dreams – there are so many CF patients out there living full lives. All you need is confidence in that belief that you can do anything you put your mind to.