“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 two-and-a-half. 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 CF 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.
Colleen on Running and the 'Run for Roses'
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 CF, 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.
Colleen's Advice for People with CF
I am proud to say that my family will continue to raise money for CF 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!
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 Sport: Running
Role Model: My sister Katie, she inspires me to try new things
Dream Vacation: Italy
One Word to Describe You: Passionate
Find out more about Run for Roses at: www.runforroses.com