Maybel will be 2 for the next Great Strides Walk! She 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. She was in the hospital for two weeks to have a "clean out" due to having an exacerbation. This is where she is pumped with antibiotics to help try and get rid of the infection.
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 has had a great year! She has continued to thrive and hit all milestones! She is doing so good that she will be getting the G-tube removed in March that she has had since 2 months old. She was qualified to start taking a modulator that targets the root cause of CF instead of just managing the symptoms. This year we hope Maybel will be approved for a medication that will improve her quality of life so much that may allow her to decrease treatments and medications because her body could start functioning somewhat normally. It is fundraisers like these that have helped with these medical advancements but there still is no cure. Unfortunately, there are many other gene mutations for CF and not all people diagnosed are eligible for this drug.
Please support our Team, MAYBEL’S MAGIC to help spread awareness and to contribute to finding a cure. Real progress has been made for those who have CF, but there’s still so much work to do. Please support our daughter and others affected by CF by either donating or walking with us. We are at a pivotal moment in the history of cystic fibrosis and your support matters. We are optimistic that there will be a cure in Maybel's lifetime. Until then we fight. Together, we can make CF stand for Cure Found.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.