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.
Year 1 update! Madilynn is 17 months now. Thankfully we have been free of any hospital visits or sickness, woohoo! We still work hard every day with treatments to keep her healthly and functioning as an average toddler. Madilynn is super active and full of life, and we cant wait to see what God has in store for her.
Year 2 Update: Madilynn is 2 and a half now. We are thankfull for another year free of hospital visits! We still work hard everyday with 2 to 4 treatments to keep her healthy. Madilynn loves to play and talk. Shes been fortunate to travel alot this year and see the beach and pool many times. She loves swimming!
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. Please join us in our first walk with Great Strides to spread awarness of CF, and if you cant walk with us please consider making a donation to help find a CURE!!!
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. I walk for them and hope you will support us in our efforts.Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By walking today, You are helping add tomorrows to the lives of people living with cystic fibrosis. Will you join us? Support us by making a donation to Great Strides fundraising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Please support us!
Help us reach our fundraising goal by donating to our Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.