John and I welcomed a beautiful baby girl (Madilynn Paige) July 20th, 2016. She was definitely a gift from God. Just a few short days later our hearts exploded as we got a call that we needed to come to Vanderbilt Children's Hospital ASAP as there was an abnormality with her newborn screening! Wait, What?? We Had just arrived home with our little bundle of joy and now we would need to go back to the hospital after spending almost a week in NICU! Later we would learn she was born with a genetic disorder in the name of Cystic Fibrosis. Neither of us had heard of the disease nor did we know of any family members that had it. Our first CF clinic visit was gut wrenching to say the least, as we got the final test and confirmation that she did indeed have CF. We felt like our minds were going to explode with the amount of information we were receiving as new parents to a child who was born with a life long disease. Deep down we did not want to believe what the Dr.s were saying, we just kept looking at our baby girl who was perfect in our eyes.
Today, she is a very energetic baby that is full of life. Although she looks and acts like other babies,she takes enzymes to help her absorb her food,she takes inhaled breathing treatments 2 times a day every other month to keep her lungs clear from bacteria,chest pt 2 times a day and takes vitamins, salt and acid reflux medicine every day. As she grows older, this routine will include additional medicines and treatments.
CF is a progressive disease, so we don't know what to expect other than to have faith that by supporting the CF Foundation, Madilynn will have the medicines and treatments she needs to have a full, active life. Her care takes extra work on our part, and it's definitely an emotional struggle, but we are SO THANKFUL for the CF Foundation for the advancements made in CF care that are keeping Madilynn healthy.
Now it is our mission as a family to help provide whatever help we can to the Cystic Fibrosis Foundation to find a cure for CF so that other children, parents, friends, and family have an easier road with CF.