Easton's Story :
My husband Gerrad and I received a life changing phone call while we had our 2 sons (2 years and a newborn, at the time) at a local photography studio. The nurse from our pediatrician's office wanted to let us know that Easton (our newborn) had some abnormal results on his newborn screening. All I remember her saying was something related to CF. I couldn't listen to what she was saying.
After many phone calls between myself and different providers, we had Easton scheduled for his first sweat test. We were confident that this would be a once and done. This sweat test would be completed and we would have an answer on the same day. Little did we know, some sweat tests are inconclusive. Easton's test came back a few hours later --- INCONCLUSIVE. We had to schedule another sweat test, but the doctor suggested waiting AT LEAST one month.
The date of Easton's 2nd sweat test came. Again, we waited at the clinic for the results. Again, his test came back -- INCONCLUSIVE. Easton needed to have a DNA blood test. He blood draw was August 14, 2014. We were told there was a 60 day waiting period for results from the blood test. 60 DAYS!
75 days later -- I received the phone call I had been waiting for. It was a phone call I wanted SO badly, but, at the same time, I didn't want to know what the doctor was going to tell me.
The blood test confirmed that Easton was a carrier of CF, but it also confirmed that he tested positive for cystic fibrosis.
So, here we are -- supporting the Cystic Fibrosis Foundation and PRAYING that we can make CF stand for 'CURE FOUND'!!
The CF Foundation is doing AMAZING things. Kalydeco (Ivacaftor) was approved for Easton on May 17, 2017. He started taking Kalydeco at the end of June 2017. The CF Foundation played a huge part in the research and financing behind the research for this drug. We pray that Kalydeco is doing its job and continues to help keep E healthy!
We will continue to pray that Easton continues to be as healthy as he has been over the last 6.5 years!
Easton may have CF, but CF will NOT have him!
Krew's Story :
Krew joined our family in December of 2019 and has been a fighter since day 1. He arrived 2 months prior to his due date and wowed the doctors and nurses from day 1. He is a spit fire and CF doesn't stand a chance with him.
Krew is now 2 and his spit fire personality has grown along with him.
Our family is forever grateful to those who continue to support us on this CF journey, those who support the CF Foundation, and help to raise awareness and funds to fight this crazy disease!
We will shout it from the rooftops -- CF does NOT stand a chance against our boys. Their personalities may cause us (mom and dad) gray hairs, but these boys were made to move mountains!
Join OUR team and help add tomorrows!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them. Will you join us? All we need you to do to become a member of our team is click on the "Join our Team" button. From there you can make a donation and start your fundraising.
By becoming a member of our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.