My Breathe Team Story
Lindsey Del Valle
Fundraising for 2026 Walt Disney World Marathon
Lindsey Del Valle
The call came on a weeknight 17 years ago. We were sitting on the couch watching tv and the phone rang. We had been waiting for this call. The call that would tell us if the baby boy I was carrying would be diagnosed with Cystic Fibrosis. The call changed our lives from that moment forward.
It’s hard to know what to write that can completely explain this world of CF. I have put off trying to type all that I feel as my fingers don’t know what to say. There is so much. So, so much in my mind and my heart. But it’s hard. It’s hard to dig deep into the place that holds it all. So much hope, so much love, so much pride, so much fear…. Just so much.
But it’s been 5 years since I have done this. Five years since I have reached out to raise money for the foundation that literally has funded the research for one of the drugs that has moved mountains in the CF community, and here in my life as well. And it’s time. For so many reasons it’s time for me to come to the people that have been my lifeline. To ask for your generosity once again. And it’s time now because a milestone is being reached here in our house. Somehow, some way, we have made it to senior year of high school. College applications have been sent out this past month. Ordering of the cap and gown has happened. Pictures have been taken for the yearbook. Favorite colleges have been identified.
And with every exciting moment of senior year, my heart says to hold on. To not let him go anywhere. To stay with me forever. So that I can make sure he is OK. That he has everything he needs. And I’m sure every mom says this about their senior. When you look at Evan you would think he needs nothing more than any other boy his age. But CF can be an invisible illness. You don’t see the quarterly doctor’s visits with a special pulmonologist that he has gone to since birth. You don’t see the 5 different types of medications he takes in the morning and at night. You don’t see the vest he does (not nearly as much as he should) to help loosen the mucus that is deep in his lungs. You don’t see the nebulizer treatments that happen when he’s sick. Or the hours I spend on the phone figuring out insurance issues, or medication refills, or appointment rescheduling. I could go on and on. It is complex. So complex.
While I joke with Evan that he can just stay home with me (and he jokes back that he would be happy to), I remember deep in my soul what I promised myself when his diagnosis became reality. I promised myself I would never let him be defined by cystic fibrosis. Not by me, not by others, and certainly not by himself. I promised I would never let CF hold him back. And right now I am holding myself to that promise. I have to.
So, to commemorate this significant year in our lives, I am running for the Cystic Fibrosis Foundation’s Breathe Team during Walt Disney World Marathon weekend. On January 8th, 9th, and 10th, I will run a 5k, 10k, and ½ marathon to help raise awareness and funding for the foundation. CF is a progressive, genetic disease that affects the lungs, pancreas and other organs. While so much progress has been made, there is still a lot of work to be done to find a cure. The CF Foundation is a global leader in the quest to find a cure, funding a wide range of research initiatives aimed at addressing every aspect of the disease. Fundraising is vital to ensuring the continued progress of CF research. Despite all of the achievements that have been made, there is no cure, and people with CF continue to lose their lives to this disease.
We are on the brink of extraordinary breakthroughs in CF research, but funding is critical to push the mission forward. Pharmaceutical companies will not fund this research on their own. CF affects about 40,000 people in the US, so compared to diseases like diabetes or cancer which affect millions, the potential market is tiny. The math doesn’t work for pharma… unless an outside group, like the CF Foundation, steps in. Fundraising dollars support early research and high-risk ideas while keeping the pressure on to continue the research. Without ongoing fundraising, momentum can stall. And I can’t accept that. I refuse to.
So here I am. Doing the training runs…. Writing the Breathe Team page… wishing I didn’t have to do either. Wishing cystic fibrosis wasn’t a part of my vocabulary. But man, what an amazing gift I have been given at the same time. The ability to live my life with the love, and joy, and pride that Evan gives me….. I would never have understood the depths that love can go without it.
17 years ago I did not know what the words cystic fibrosis meant. I also didn’t know the unwavering and complete generosity of people. I have always been mind blown at what we can do together. I thank you from the bottom of my heart for your continued support. You all have helped me stay true to my promise of not ever letting CF hold Evan back from becoming all he is meant to be. So, as he finishes up his senior year of high school, I will push him to continue to follow his dreams and spread his wings as far as they can take him… with so much gratitude to all of you who continue to give so generously to make sure that cystic fibrosis never stands in his way.
With Love,
Lindsey
It’s hard to know what to write that can completely explain this world of CF. I have put off trying to type all that I feel as my fingers don’t know what to say. There is so much. So, so much in my mind and my heart. But it’s hard. It’s hard to dig deep into the place that holds it all. So much hope, so much love, so much pride, so much fear…. Just so much.
But it’s been 5 years since I have done this. Five years since I have reached out to raise money for the foundation that literally has funded the research for one of the drugs that has moved mountains in the CF community, and here in my life as well. And it’s time. For so many reasons it’s time for me to come to the people that have been my lifeline. To ask for your generosity once again. And it’s time now because a milestone is being reached here in our house. Somehow, some way, we have made it to senior year of high school. College applications have been sent out this past month. Ordering of the cap and gown has happened. Pictures have been taken for the yearbook. Favorite colleges have been identified.
And with every exciting moment of senior year, my heart says to hold on. To not let him go anywhere. To stay with me forever. So that I can make sure he is OK. That he has everything he needs. And I’m sure every mom says this about their senior. When you look at Evan you would think he needs nothing more than any other boy his age. But CF can be an invisible illness. You don’t see the quarterly doctor’s visits with a special pulmonologist that he has gone to since birth. You don’t see the 5 different types of medications he takes in the morning and at night. You don’t see the vest he does (not nearly as much as he should) to help loosen the mucus that is deep in his lungs. You don’t see the nebulizer treatments that happen when he’s sick. Or the hours I spend on the phone figuring out insurance issues, or medication refills, or appointment rescheduling. I could go on and on. It is complex. So complex.
While I joke with Evan that he can just stay home with me (and he jokes back that he would be happy to), I remember deep in my soul what I promised myself when his diagnosis became reality. I promised myself I would never let him be defined by cystic fibrosis. Not by me, not by others, and certainly not by himself. I promised I would never let CF hold him back. And right now I am holding myself to that promise. I have to.
So, to commemorate this significant year in our lives, I am running for the Cystic Fibrosis Foundation’s Breathe Team during Walt Disney World Marathon weekend. On January 8th, 9th, and 10th, I will run a 5k, 10k, and ½ marathon to help raise awareness and funding for the foundation. CF is a progressive, genetic disease that affects the lungs, pancreas and other organs. While so much progress has been made, there is still a lot of work to be done to find a cure. The CF Foundation is a global leader in the quest to find a cure, funding a wide range of research initiatives aimed at addressing every aspect of the disease. Fundraising is vital to ensuring the continued progress of CF research. Despite all of the achievements that have been made, there is no cure, and people with CF continue to lose their lives to this disease.
We are on the brink of extraordinary breakthroughs in CF research, but funding is critical to push the mission forward. Pharmaceutical companies will not fund this research on their own. CF affects about 40,000 people in the US, so compared to diseases like diabetes or cancer which affect millions, the potential market is tiny. The math doesn’t work for pharma… unless an outside group, like the CF Foundation, steps in. Fundraising dollars support early research and high-risk ideas while keeping the pressure on to continue the research. Without ongoing fundraising, momentum can stall. And I can’t accept that. I refuse to.
So here I am. Doing the training runs…. Writing the Breathe Team page… wishing I didn’t have to do either. Wishing cystic fibrosis wasn’t a part of my vocabulary. But man, what an amazing gift I have been given at the same time. The ability to live my life with the love, and joy, and pride that Evan gives me….. I would never have understood the depths that love can go without it.
17 years ago I did not know what the words cystic fibrosis meant. I also didn’t know the unwavering and complete generosity of people. I have always been mind blown at what we can do together. I thank you from the bottom of my heart for your continued support. You all have helped me stay true to my promise of not ever letting CF hold Evan back from becoming all he is meant to be. So, as he finishes up his senior year of high school, I will push him to continue to follow his dreams and spread his wings as far as they can take him… with so much gratitude to all of you who continue to give so generously to make sure that cystic fibrosis never stands in his way.
With Love,
Lindsey
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