2024: This is our second year participating in the cystic fibrosis walk in honor of our daughter, Maison Caira. If you want to know more about her or our backstory, you can scroll down and read my excerpt from last year.For now, I’ll give you an update for her for 2024. She is currently in dance once a week and is in track 2 to 3 nights a week with a track meet every weekend, which she actually loves. (Mainly for the social aspect, and clearly not for the aspect of winning a race as anyone who has been to one of her meets has clearly seen haha.) she’s wrapping up her last year at preschool in TK and she will start kindergarten in the fall, which I definitely shed a few tears over as I was registering her!
Many have asked me how Maison has been since starting her new medication Trikafta. The only comparison I can make to before vs after, is that she combated this cold/flu season with flying colors compared to 2023. As most of you know/remember, Maison was repeatedly ill and on back to back antibiotic rounds from Oct 2022-March 2023. Her illness eventually got us labeled with “cystic fibrosis exacerbation” which landed her in the hospital for a GRUELING 14 days of hell. This included breathing treatments every 4 hours around the clock and 12 hours of IV antibiotics per day. In contrast, this school year, I can count the days of school she has had to miss due to illness on one hand!!! And she has only been on one course of oral antibiotics this cold season as well. What more of an improvement could we possibly hope for?! We considered ourselves lucky even before Trikafta was available to us; so being granted that gift on top of her (mostly) manageable disease is something to thank God for every day. We are eternally grateful for the advancements that have been made in medicine and are continuing to happen. We won’t stop walking and supporting and raising money until our May May is cured. Thank you again and we look forward to seeing you and shedding a tear for each and every donation tha
2023:The people who walk with us, walk in support of my daughter Maison. She is my first daughter and was diagnosed with Cystic Fibrosis via genetic testing when I was 14 weeks pregnant. The fear that shook our family at its beginning can not be put into words. But we knew she was meant to be here and we weren’t wrong. We have worked so hard to keep Maison healthy and decided to keep her illness under wraps and on a “need to know” basis. Until she was hospitalized, Maison did not really think she was different from anyone else and never questioned it. But once she went to the hospital, she told me she just wants to be like the other kids that don’t have to do vest. My heart was literally torn. I asked her if she wanted to meet other kids that have to do what she has to do and she said yes. Immediately my desire to keep this all “under cover” was eliminated. All I want for her is a happy, healthy and fulfilling life. This is my way to get out there and help Maison to see that she is not alone in her disease or in her fight. Because I will fight as long, as hard and as strong as the mafia to do anything and everything to see her not only outlive me, but thrive while doing it. I hope to see a cure for my baby in this lifetime and the only way I know how to contribute at this time is by doing this and by donating.
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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.