I remember being pregnant and when people would ask me if I wanted a Boy or a Girl, I would say “It really doesn’t matter to me, whatever God gives me”, and then they would reply “As long as it’s healthy, right?”  Well that always really annoyed me.  My husband and I decided to have a baby, because we wanted a baby, whether it was healthy or not, we still wanted a baby.  It really bothered me because I really didn’t care.  I look back on that now and I think it was God mentally preparing me for Waylon and what we didn’t know was coming. 

Well it wasn’t long after Waylon was born that we knew something wasn’t right.  He wasn’t gaining weight, he had terrible reflux, and his poop smelled like a chemical you would use to cure cancer!  By 5 weeks he had a serious cough and was under weight at 5 lbs 3 oz (a whole pound lighter than his birth weight).  Then my friend and P.A. Jennifer Cheeseman-Trost came to my house to reveal the results of Waylon’s new born screening test. She said “I’m so sorry, Waylon has Cystic Fibrosis”. I can still hear those words in my head today, as that day changed my life forever.  We went to Childrens National Medical Center the very next day for a full day of appointments and test.  We spent the next 18 days there treating him and learning about CF.  We were so scared and worried that our little precious gift would not live a long time, and his life would be altered.   Waylon, now 3 years old, has showed us his true strength. He has battled several lung infections, requires daily breathing treatments, chest physical therapy, special diets, medication (including 18-27 pills a day) and routine trips to the doctors and hospital. He never ceases to amaze me and even when he is at his sickest he always puts that silly big smile on his face.  We are so proud of him and how he handles all of his special maintenance requirements!  What 3yr old do you know who can swallow 18-27 pills a day??  Waylon Can!

After the dust settled and we started to get into a routine with Waylon, we wanted to fight back.  We have a very connected community, and had the idea to start a Great Strides Walk in our local area.  We decided to attend the Waldorf Walk, to see what it was about and get a feel for the event.  We created the team “Waylon’s Warriors”.  That year Waylon’s Warriors won the “Rookie Team of the Year” for the whole DC Metro area!   It wasn’t long after that we launched the 1st Annual Great Strides Walk at the Wharf in Leonardtown, Maryland.  We worked hard to get the word out to make this walk a success.  We raised the 2nd highest amount for a 1st year walk in the entire Unites States!!  We were and are so proud of our accomplishments.  Not only because of our hard work, but because we knew it would make a difference.

 We choose the Great Strides way because it benefits the Cystic Fibrosis Foundation, and nearly 90 cents of every dollar goes directly toward CF research.  In 1955 kids who had CF barely made it to elementary school, now because of the CF Foundation 48% of people with CF are over 18 years old and the life expectancy is 37 ½ years old!  Furthermore, on January 31st this year, the FDA approved THE VERY FIRST DRUG THAT TREATS THE UNDERLYING CAUSE OF CF!!!  Before this we only had medicines to treat the symptoms.  President and CEO of the CF Foundation said it best with this:  “Today marks an important milestone in our journey to find a cure for cystic fibrosis,”  “Kalydeco addresses the underlying cause of CF, and the science behind the drug has opened exciting new doors to research and development that may eventually