Just a few weeks ago, Cystic Fibrosis was something we had heard of, but knew little about. In a very short time, that all changed.
We never would have dreamed that at one week old we would get a call from our amazing pediatrician trying to gently break the news to us. She asked if we could get on the call together, which is seldom a good sign. We will never forget her saying to us, "I am so sorry to tell you this over the phone." Our world stopped while waiting for what was to come next. Our brand new baby had tested positive for Cystic Fibrosis on his neonatal profile testing.
There are no words that can explain the amount of anguish that came with hearing those words. She explained everything she possibly could to us over the phone, faxed us paperwork, and had us at the UK Pediatric CF Clinic within a few days. The days leading up to that appointment were scary, stressful, and very humbling. Some of the many questions rushing through our minds were how, why, where do we start, how do we make sure he gets the best care possible, and what will his life look like from here? And then, what about Claire? Yes. She would also need to undergo testing.
From that first appointment on we have been overwhelmed by the support of the UK Clinic and the CF Foundation. They have been there from day one to get his enzymes, vitamins and formula expenses paid to help cover any financial burden. They have connected us with helpful and up to date treatment options, linked us with other parents of CF patients, and they regularly reach out to see what we need. It has been amazing to have the support, understanding, and knowledge from people in our exact same situation.
This is just the start for our family, but because of this foundation, we are able to see a bright future for our sweet Jameson.
What Jameson, and so many others need, is advancements in medical research. That is where you can help. Your support can help find a cure for Cystic Fibrosis.
Please help and donate to the Cystic Fibrosis Foundation by joining our “Team Mountain Climbers” for a virtual walk. This little man will climb mountains and we have no doubts about that!
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.