Jerry Schmaing

Ten months ago, my wife Ashley and I welcomed our second child, Madison, to this world. She was ready and came quicker than expected. On our way to the hospital, we had to pull to the side of the road and call 911. Madison was born in our truck, and it was the most intense 10 minutes I have ever experienced.

Just as the shock of her birth was starting to subside, we were notified that she may be diagnosed with cystic fibrosis (CF), and we were shocked a second time. Genetic testing would confirm the CF diagnosis days later.

Overcome with emotions and unfamiliar with CF, we were lost. We had so many questions. What is CF? What will Madison’s life look like? How many medicines will she need to be on? What are the underlying complications she will face as she grows up? The thought of your child having a chronic diagnosis can and will twist and turn you into a state of uncertainty.

 After ten months on this journey, it is safe to say our life looks nothing like we had imagined. Madison has a daily routine that requires our full attention. We have opted to find a nanny for her to keep her safe from colds and respiratory infections. We spent our first stint in the hospital when she got RSV and needed breathing assistance.

This is our new normal. With tremendous help from family, friends, and our employers we have been able to get through this time.

Dispiste all this Madison has been a joy to our lives. She lights up a room and never fails to greet people with a tiny yet wholehearted wave. She loves to play with her big brother (Luke), watch mom and dad out the back window and will even join in on Luke-dad wrestling matches. She is confident, sassy, fearless, tough, ready for anything. She is our little girl, and we love her.

By supporting our Great Strides campaign, you are supporting the Cystic Fibrosis Foundation which helps all those living with CF and their families navigate this uncurable genetic illness. The CF Foundation supports research and clinical trials of new CF therapies and cures. By supporting us and the CF Foundation you are supporting the efforts to find a cure for cystic fibrosis.

For more information on CF and the CF Foundation please visit https://www.cff.org/