A Year in Rewind

Life is short….

Time is fast….

No replay, no rewind….

So enjoy every moment as it comes….

The above words hit close to the heart as we look back on 2024. First, apologies for the very lengthy delay since our last update. However, we have been living life to the fullest and enjoying every moment. As a family, we have spent endless hours laughing, experiencing, growing, continuing our fight against this disease, and most of all, loving this life.

As I look back on the year, not every day was easy, but we left no days in regret. We had a year of adventures and friendships. We had a year of growth, gratitude, and humbleness. Most importantly, we had another year of unimaginable support from all those who support the mission of the Cystic Fibrosis Foundation and our Marlee.  And while we are beyond grateful for all of these moments, nothing compares to watching our daughter continue to grow and accomplish amazing things.

The year started off strong. After much heartache, stress, and worry, the Colorado Prescription Drug Advisory Board decided that Trikafta (aka the “game changer” drug) was not unaffordable for people with Cystic Fibrosis, which means we will have no disruption in our access. However, this ruling did not come easy. We honestly believe the results may have differed if it had not been for the strong voice of the CF Community and the continued media coverage.

In early 2024, Marlee was notified that she would be granted a wish by way of the Make-A-Wish Foundation. Marlee had all sorts of ideas but settled on a few key areas. She wanted to ride on an airplane or a boat and meet her favorite princesses. The Make-A-Wish team got to planning, and to Disneyworld, we would go. Our trip was full of adventure and joy. Marlee sat in the cockpit of the airplane, met all of her favorite princesses, rode some pretty amazing rides, dipped her toes in the ocean, and enjoyed every minute of her boat ride, which included being alongside a pod of dolphins. In addition to our amazing trip, Marlee was given the opportunity to be the honorary Wish Kid for the annual Wish Week fundraiser held by Eagle Valley High School. Through various events, the school raised $36,000 for the Make-A-Wish Foundation. It was such an honor for our family to be able to experience the support we felt as a community came together to support such a wonderful organization.

Read More About It Here:  https://www.vaildaily.com/news/eagle-valley-high-school-raises-over-36000-for-make-a-wish-colorado/

As our summer adventures wrapped up, Marlee started kindergarten, and oh, was she excited and ready. Me, not so much. She has excelled and has done so with such grace. Her teachers describe her as being kind, empathetic, caring, supportive, and a protector. She stands up for what is right and for those who may not have the courage to do so themselves. She has developed a friendship in which she is comfortable showing all sides of her life with CF. While Marlee’s life may look a little different than those she shares her classroom with, she feels like a normal kinder, as they say, and that is a dream come true for us.

Marlee continues to thrive on Trikafta, and over the course of the past year, we had what you would call a “healthy” year. While we had our share of illness, rather than being on her sick plan for weeks on end, she would be back to her full self in a matter of days. Even on what we call “sick plan” days, she would rarely skip a beat.  We continue to attend our quarterly clinic days at Children’s Hospital, where we meet with all the doctors who make up her Care Team. While we absolutely adore and love our entire team, we were so thankful we did not need to see them more than we were required to.  We were lucky enough to attend some events with our lead doctor, Dr. M. Oh boy, did Marlee love seeing her outside of the hospital.

In 2024, Team Marlee’s Magic raised over $115,000 in support of the Rocky Mountain Cystic Fibrosis Foundation. Combine that with our previous four years of fundraising, and we have raised over $350,000 in total! That is amazing! We always knew the support was strong, but to see that amount is jaw-dropping.

On behalf of Marlee, our family, and all of our CF Fighters, please understand the sincerity behind our words when we say thank you. While these words are said often, you must know how true they are to our hearts. In your continued support of the Foundation and its mission to find a cure for all those living with Cystic Fibrosis, you have given our daughter a chance at life. You have allowed our daughter to dream of a life where anything is possible, and in that life, a chance for her to say she once had Cystic Fibrosis.