My Great Strides Story
Colleen Lewton
Fundraising for Roanoke Great Strides 2026
Colleen Lewton
In early February, William asked me a question after breakfast. He asked, “What happened to people with CF before they knew what CF was? Didn’t they not always know about CF?”. I asked him to clarify his question so I could buy some time with this one. He said, “Like back in the 1800s, what happened to people with CF?”. Here is a classic moment that every parent faces when you have to decide what to say, how much to say, how to say it, and make that decision all in a split second. I talked to him about how back then children died as babies or might have lived until they were 2 or 3 years old. We talked about how it was more recent than the 1800s, and it wasn’t until the 1980s that people with CF started taking enzymes. William needs a full dose of enzymes to absorb his food, and we have talked about before how if he doesn’t take his enzymes it’s like he isn’t eating. He made the connection about what happens when someone doesn’t eat for a long time. William was silent and I could see him thinking through what all this meant. He responded by saying, “Well then I am so blessed that I have Trikafta and enzymes.”, and I said, “Yes you are.”. I was so proud of William coming to this conclusion all by himself.
There are so many organizations out there that use gimmicks and manipulative techniques to try and get your money. At the same time I am sure there are many organizations out there that are sincerely and ethically working to help others by asking for money. The reality is that without money, research and advancements cannot be made. All I know for sure is that William’s life is very different than it could have been. Without enzymes, I do not believe he would be with us at 10 years old since he has very little pancreatic enzyme function. Without Trikafta, who knows if he would have had more lung infections, exacerbations, or hospitalizations. I will not act like I know for sure the cause of his current good health, but I have heard the stories from CF parents from just 5 years ago and more. The heartbreaking stories of sickness, hospitalizations, low lung functions, and how that was turned around for so many after starting Trikafta. William does not have a mild case of CF. He would not been one of those people finding out he had CF at 30 years old. He needs these daily medications to live, and he still has struggles for which we are praying and hoping for some support. Cystic fibrosis is still a chronic degenerative disease where people who have it suffer daily. People say that William looks “normal” on the outside, which is true, but there is a lot going on inside his body and behind closed doors that no one else sees or experiences. There is no perfect drug for William, side effects are clear in his every day life, but we are grateful that he does have enzymes and Trikafta to help with the symptoms and challenges of CF. The side effects have not outweighed the good that the medications are doing.
We appreciate any support that you are willing or able to give to keep trying to help William, and many who have CF, to feel as normal on the inside as they look on the outside.
William turned ten years old this year. He completed his 32.8 mile bike ride last October with no problems! He loves to be active, which we are so grateful for since exercise helps keep people with CF healthier. William is currently playing baseball and is practicing to be one of the pitchers for the team. He is also training for the long bike ride again in October. William also loves playing the guitar. This gives him an outlet and a freedom that he needs when he feels bogged down by all the every day medicines, treatments, and boundaries in his life. We are grateful that he has these opportunities.
Thank you for the love and support you have shown and continue to show William and our whole family.
With Gratitude,
William, Dan, Colleen, Cecilia, and Jonathan
(Team Will-da-Beast)
There is currently no cure for cystic fibrosis and too many people with CF die young. I’m walking to help change that reality.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
There are so many organizations out there that use gimmicks and manipulative techniques to try and get your money. At the same time I am sure there are many organizations out there that are sincerely and ethically working to help others by asking for money. The reality is that without money, research and advancements cannot be made. All I know for sure is that William’s life is very different than it could have been. Without enzymes, I do not believe he would be with us at 10 years old since he has very little pancreatic enzyme function. Without Trikafta, who knows if he would have had more lung infections, exacerbations, or hospitalizations. I will not act like I know for sure the cause of his current good health, but I have heard the stories from CF parents from just 5 years ago and more. The heartbreaking stories of sickness, hospitalizations, low lung functions, and how that was turned around for so many after starting Trikafta. William does not have a mild case of CF. He would not been one of those people finding out he had CF at 30 years old. He needs these daily medications to live, and he still has struggles for which we are praying and hoping for some support. Cystic fibrosis is still a chronic degenerative disease where people who have it suffer daily. People say that William looks “normal” on the outside, which is true, but there is a lot going on inside his body and behind closed doors that no one else sees or experiences. There is no perfect drug for William, side effects are clear in his every day life, but we are grateful that he does have enzymes and Trikafta to help with the symptoms and challenges of CF. The side effects have not outweighed the good that the medications are doing.
We appreciate any support that you are willing or able to give to keep trying to help William, and many who have CF, to feel as normal on the inside as they look on the outside.
William turned ten years old this year. He completed his 32.8 mile bike ride last October with no problems! He loves to be active, which we are so grateful for since exercise helps keep people with CF healthier. William is currently playing baseball and is practicing to be one of the pitchers for the team. He is also training for the long bike ride again in October. William also loves playing the guitar. This gives him an outlet and a freedom that he needs when he feels bogged down by all the every day medicines, treatments, and boundaries in his life. We are grateful that he has these opportunities.
Thank you for the love and support you have shown and continue to show William and our whole family.
With Gratitude,
William, Dan, Colleen, Cecilia, and Jonathan
(Team Will-da-Beast)
There is currently no cure for cystic fibrosis and too many people with CF die young. I’m walking to help change that reality.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
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