Our Great Strides Story
Our family's journey with cystic fibrosis began in November of 2013 when our Andrew was born. He was diagnosed roughly 2 weeks after he was born because of a meconium ileus (bowel obstruction) that was seen on an ultrasound when he was still in utero. On the day he was born, Andrew underwent emergency surgery that removed 40% of his small intestine. He spent roughly the first 3 months of his life in the NICU where his parents and care team learned how to navigate this new world.
In 2018, our family continued to grow with the addition of our sweet, sassy, silly, sometimes a bit obnoxious Cecelia. Because the care team knew that parents, Kathryn and Matthew, were both carriers of the CF gene, they were able to test CeCe for CF before she was born. When it was confirmed that she had cystic fibrosis, the family and care team were able to prepare for her arrival and the challenges that accompany CF. Thankfully, CeCe did not have meconium ileus and did not have to spend time in the NICU like her brother.
Today, Andrew is 10 years old and doing very well thanks to the incredible advancements made due to fundraising efforts from events like Great Strides. He is taking the Trikafta modulator which helps him live a more normal life. He loves all things Pokemon, Minecraft, Avengers, and annoying his sisters. CeCe is 5 going on 15... just a little bit of sass... sometimes! She is also now taking Trikafta and doing well. She is taking dance classes, loves "Anti-Hero" by Taylor Swift (she's the problem, it's her), princesses, and talking incessantly!
As Andrew has gotten older and started understanding more about his CF, it has led to a lot of inevitable questions and anxieties. Several times when he's doing his breathers (treatments) he asks how long he'll have to do them for. The cold, hard truth is likely the rest of his life. However, we hold onto the very real hope that one day we will be able to jump for joy and cry all of the happy tears and say, "NO MORE!" because we will find a cure - but we need your help. Will you join us?
We walk for a cure for all people with cystic fibrosis. By joining our team, you can help us end this disease!
To become a team member, click the “join this team” button. Once you register, it’s easy to donate and start fundraising.
Our team is determined to ensure that every person with CF can live a long, healthy life, without the limitations caused by their disease. We can’t wait for you to join us.
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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.