Maylie’s Story

 

My beautiful daughter Maylie is five years old and was diagnosed with Cystic Fibrosis a month before her third birthday. She has Cystic Fibrosis, but Cystic Fibrosis does NOT have her. I have certainly experienced moments of devastation when fears for my daughter’s future invade my hopes and dreams. But I have not lost faith. Maylie is determined, strong, beautiful and full of life. She teaches me each and everyday to reach for my highest hopes in this life.

I know all too well the many fears that accompany a diagnosis of Cystic Fibrosis regardless of my confidence in science providing a cure. While providing the on-going treatments for Maylie throughout the day, I am thankful that I have resources and networks in which I have access to medical and scientific specialists to obtain information that provides confidence and hopefulness.

In honor of Maylie and her spirit for life I have started the Blooming Rose Foundation, a nonprofit organization. It is designed to assist families that have been given a diagnosis of Cystic Fibrosis, at any point. BRF would like to share with other families what we have learned about the latest research, medications, and promising future. We hope to help other children with Cystic Fibrosis thrive when surrounded by those with positive outlooks based on knowledge and hope. We have faith in the future of every individual with Cystic Fibrosis as the cure rapidly approaches.

Maylie’s Video