On September 1st, 2013 our beautiful baby boy was born. He was everything we dreamed of and more...healthy, handsome, and a miracle! Six weeks later we received the news that has forever changed our lives. Evan was diagnosed with Cystic Fibrosis.
There are approximately 30,000 Americans living with cystic fibrosis. Due to their genetic disease they, and Evan, struggle every day just to breathe. Every day we do an hour (sometimes more) of chest physical therapy and airway clearance to help keep Evan's lungs clear. Evan also takes around 15 capsules of medicine a day to help his body break down food and absorb the nutrients he needs to grow. There is currently no cure.
Currently, the life expectancy for Cystic Fibrosis is 41. When Evan was first diagnosed, after an extremely long day of being educated on how to take care of our son and his new disease, our doctor came into the room and told us, "This used to be the hardest diagnosis because there was no hope. All I could tell my patients and their families was to do all they could to keep their child healthy and enjoy every day. But, for the first time in CF history, I can tell you two there is hope. So hang in there. There's hope."
We have clung to that hope, and a greater hope, from that day forward. The progress made in CF medications in the last two years are nothing short of a miracle. For the first time, we are seeing break through drugs that are treating the underlying cause of CF and not just the symptoms. We pray fervently for the continued speedy advancements of these drugs. We believe if we do not see a cure in Evan's lifetime, we will come awfully close.
Please join us in walking in support of Evan wherever you may be around the country. Please donate to help continue the advancement of these important medications that will add years to our son's life and the lives of so many others struggling with the genetic disease. When your son is given a life expectancy, you do your absolute best to provide the best care, the best surroundings, and advance the cause will all your might until all you have left is HOPE! Join us and forever join Evan's Entourage!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.