Maybel's Magic

Maybel was diagnosed with Cystic Fibrosis ten days after birth through the newborn screening.  Austin and I have no known family members with CF or any known carriers in our family but we found out by Maybel testing positive in this newborn screening that we are both carriers of this disease. 

We had 3 hospital stays during her first year of life and needed significant support to manage a variety of symptoms. She had a G-tube placed at 2 months old to support her ability to eat, grow, and gain weight. Last year she was able to have this removed because of her significant progress! 

CF is a disease that causes Maybel's body to create a thick sticky mucus in her lungs, pancreas and other parts of the body. She, along with others affected by CF have to work extra hard to stay healthy and work out secretions. She has a daily routine filled with medications and therapies to manage her CF. Currently, there is no cure and the therapies only help manage and slow the progression of the disease. 

Maybel has to do vest treatment 2 times a day for 25 minutes while doing nebulizer treatment. When she is sick, she has to do it 4 times a day for 25 minutes. This vest shakes her and helps break up and loosen the thick mucus. 

Maybel started taking Trikafta this year, which targets the underlying cause of CF. This is by no means a cure and she has to do a lot every day to stay healthy. It is fundraisers like these that have helped with the progress to finding a cure and the development of other therapies.

To our ongoing supporters, your unwavering support doesn't go unnoticed. From the bottom of our hearts, thank you.