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.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.