Our Story

Maddie was born January 13, 2021 and it was truly the best day of our lives. She was, and still is, the most beautiful baby. Two weeks after she was born we found out through the Newborn Screening that she had Cystic Fibrosis. Kevin and I had no idea we were even carriers so it definitely took us by surprise; we couldn't believe that we passed on this genetic disease to our beautiful baby girl. Fortunately, we have been receiving the best medical care for Maddie and we have hopes that she will live to be a grandma someday! We have been working with the CF Specialists at Lurie and to say they have been incredible, would be an understatement.

For those of you who don't know, people with CF have a salt imbalance in their cells which leads to a buildup of mucus in their lungs and pancreas.  People with CF can't digest the fat, protein, and carbohydrates in their food which is why Maddie kept losing weight the first two weeks of life, despite eating like a horse. We need to give Maddie enzymes every time before she eats so that her body can take the nutrients out of her food like the rest of us do automatically. This will be something she needs to continue for the rest of her life. Another struggle, and honestly the biggest struggle for people with CF, is that their body can't get rid of mucus and it just stays in their lungs. A simple cold for you or me, will stay in Maddie's lungs for significantly longer and can do lifelong damage. In an attempt to prevent Maddie's lungs from collecting mucus, we put her in a vest that helps break up the mucus for thirty minutes a day. Kevin and I have watched more Spidey & His Amazing Friends than we dare to admit because that’s how we get Maddie to sit still for her chest therapy every day! :)

We have been incredibly lucky because Maddie has been on Trikafta since she was two and a half years old.  Trikafta helps Maddie’s CFTR protein in her cells to work properly and helps prevent mucus from building up in her lungs.  

We can't begin to tell you how much all your love and support has meant to us the past four years. I honestly don't think you will ever know how much it means to us. Thank you so much for keeping our sweet girl in your prayers and helping us raise money for CF research. There are so many amazing drugs coming down the pipeline that could literally be life changing for Maddie; we are excited for the future and can't wait to see what is coming our way. Research is such a critical part for helping everyone with CF so funding is essential. If you are able to help support the Cystic Fibrosis Foundation (CFF) we would greatly appreciate it. We are going to participate in the Great Strides Walk on Saturday, May 31 st in Palatine. Last year we were absolutely overwhelmed by everyone's support. Over the past four years our team has raised over $68,000… it makes me want to cry just thinking about it.  Cystic Fibrosis research is not government funded so your donations are greatly appreciated! We will be posting information on Facebook on our page, Making a Difference for Maddie, as it gets closer so feel free to follow us for updates!

We can't begin to express our gratitude for each and every one of you.  You will always have a special place in our hearts.  :)

With so much love,  

Amanda, Kevin & Maddie Mazur