Madelynn was 7 days old when the pediatrician called her mom, Rebekah, around 6pm in the evening (never a good sign). Rebekah knew right away that something was amiss.
The pediatrician mentioned cystic fibrosis and said they should do some testing on baby Madelynn. She was 14 days old when she went for her first sweat test. Rebekah was petrified holding her newborn while electromagnetic currents were taped on Madelynn’s arm. Then, they had to sit in a hot room, hoping for Madelynn to produce enough sweat to test for sodium chloride levels. The waiting was awful.
Early the next morning, they received a call from the pediatrician, stating they had a 3pm appointment with the pulmonologist. This is when Madelynn’s journey with CF began.
When Madelynn was 7 years old, her family found out that one of her original CF doctors was retiring. Additionally, her family had recently moved to West Chester, PA. So, they began searching for a new hospital and CF team to join. During this time, Madelynn’s family learned that Dr. Lauren Greenawald, a favorite doctor from their previous team, would be moving to Nemours Children’s Hospital, Delaware. This made their decision to begin care at Nemours very easy!
“Dr. Greenawald not only treats Madelynn like a real kid, but she explains things that help Madelynn’s wise brain understand CF in a special way, so that Madelynn can better take care of herself,” says Rebekah. “Madelynn has loved persuading the respiratory therapists to blow up rubber gloves and do jumping jacks with her before her throat cultures. Great way to get her lungs working, too!”
“Currently, there is no cure for Madelynn’s life-threatening disease,” explains Rebekah. “She has some really good days, but when she does get sick, she gets pretty sick. Her most recent hospital stay was for 2 weeks over Thanksgiving in 2021.” Madelynn attends quarterly visits with Dr. Greenawald, Dr. Chidekel, and the rest of her team. She spends hours each day taking medications and doing airway clearance. While Madelynn is busy taking care of herself and being a kid, she has a wonderful family supporting her throughout.
“The goals for our family always change as Madelynn gets older, wiser, and more aware of things,” says Rebekah. “Madelynn likes to push off her treatments (as anyone would want to) and she likes to say things to get out of taking her medicines, ‘I’ve grown out of those,’ or ‘I don’t need that anymore.’ So, we continue to encourage and support her through these waves of rebellion. But, as she continues to mature, teaching her to advocate on her own behalf is crucial as well.”
“From a mother/caregiver perspective, I can’t stress this enough,” begins Rebekah, “Ask for help, and then take it without guilt. Parenting is hard. Parenting a child who is sick is even harder. We are not alone in this gut-wrenching fight to help our child through their illness. Savor the great, tiny moments to get through the hardest ones. Question their teams, ask ‘why or why not?’ Trust the team, but always trust your gut, too. It’s okay to cry so we can be strong for our babies who need us the most.”
Despite her diagnosis, Madelynn is a bright and fiery spirit. “We have all learned this new way of life with her,” says Rebekah. “She takes many medications, endures hours of airway clearance every day, and has had countless doctors’ appointments along with long hospital stays. Our family has become who we are as individuals, and as a whole, because of cystic fibrosis. Dad, caring and willing to do anything to help his baby girl take care of herself. Big Brother, always reminding her that the medicines and treatments are good for her. He’s the first one to grab the neb cup and turn on Minecraft for her. And me, her mom, using my voice every day to spread awareness and support towards CF. And, most importantly, to speak up and advocate on Madelynn’s behalf, while guiding her to speak for herself, as well. She has more fight than we (almost) know what to do with. She is determined, strong and incredibly wise.”
