William Lewton

2024

    It brings such joy to be able to share how William has been doing this past year. William turned eight years old and we have witnessed many areas of growth and development in his life. A significant accomplishment was when William rode 13.4 miles on a bike ride for charity in October. This achievement demonstrates not only William’s perseverance and strength, but shows how healthy his lungs are since the route was very hilly and on mostly gravel back country roads.

   William’s lung function has been strong and at healthy levels for the majority of the year. His lung function did drop to a much lower level a few months ago due to a bad cold, but he is currently back to his normal level. William is a fighter and does what is required during those times when he is sick. That includes extra treatments, extra medicine, and taking care of his body with proper diet and sleep in order to regain his good lung function. He does all this with very little complaint and understands what he needs to do.

    William continues to battle some undesirable bacteria in his body, but with his strong lung function, it is not a concern to his doctor at the moment. We are grateful for his CF Care Team at UNC who are diligent, vigilant, and caring when it comes to William’s health. He is still doing well on Trikafta, which is a CF drug that brings hope to extending life spans for people with CF.

    William hasn’t just had the opportunity to strengthen his physical body this past year, but also his mental and emotional sides as well. William had to say goodbye to two important people in his life in the summer of 2023: his Papa (Grandpa) and his Uncle Dave. He was able to ask mature questions about death and appropriately mourn these two men in his life. Grieving the loss of loved ones has been an opportunity for many indispensable conversations in our family about how this life is precious, short, and nothing is guaranteed. We try not to take the days we are given for granted, and this is a way by which William’s Papa, Bruce, always lived. Now that William’s Papa has passed, it is up to us to pass along his valuable qualities and life lessons to William such as: never fear, never quit. An essential value for someone living with CF to possess.

    William is performing well in school and showing improvements all the time. He completes his schoolwork as quickly as he can so he can move onto the activities he really enjoys such as playing outside, riding his bike, woodworking, experimenting by taking things apart (and not always putting them back together, like his mother’s watch!), figuring out how things work, and playing sports like soccer, baseball, and basketball. He has also been learning to play the guitar and a little bit of the piano. He adores his little brother and is thrilled that Jonathan is showing a love for cars and trucks just like him.  It makes for great times together as Jonathan now spends every treatment  with William.  Cecilia is William’s best friend and it’s heartwarming to see them play together day after day.

    As we update you on how William is doing, you can clearly see that Cystic Fibrosis does not define his life. To him, it is an inconvenience of treatments twice a day, taking medicine with every meal, and extra doctor’s appointments. Although he never seems to mind the doctor’s appointments since that means time in Cary, NC at his Aunt Jackie’s house, which is always a treat. When he had to go to an extra appointment in January he said, “It was a good thing I got sick so we had an extra trip to Aunt Jackie’s!”.

    William brings joy and laughter to us everyday, and we are so grateful for this gift that God has given us. While we know that anything could change at any time, we feel blessed for William’s current health. We are learning all the time that we must be thankful for what we have while we have it, and focus on what we have instead of what we don’t have. We are eternally grateful for the loving and supportive family and friends who are thoughtful of William, who keep him in their prayers, and are there to give support and encouragement throughout his journey. If you are reading this, that means you have been involved in William’s journey one way or another. Thank you for all the ways in which you have impacted William’s life.

We love you and are grateful for you,

Dan, Colleen, Cecilia, WILLIAM, and Jonathan

2023

William has had another eventful year! The biggest news he would like to share is that he became a big brother! William took to this role very quickly, and it is another way that we are fortunate to see William’s warm and kind heart every day. William wanted his brother to have CF so that he could be a “good big brother and teach him how to do treatments, take enzymes, and have a CF buddy”. God did not grant William his wish, but we have no doubt that Jonathan will show William just as much love and support as his big sister, Cecilia, does. It brought both tears of joy and sadness to our eyes observing how William wanted to share this CF experience with his little brother, and how he can feel alone with his own CF.

We managed to escape COVID for a couple years, but it finally caught up to us and we all got it last summer. William likes to point out that he was the one who started it. :-) He is also the one who did the best with it, never coughing once and just having a fever and low energy for a few days. We were so thankful for this!

Something else significant in William’s life is that he started taking Trikafta (a newer and more effective CF medicine) last summer. Thanks to all the people who have donated to the CF Foundation, we now have a medicine that has made a great impact in the lives of people with CF. Fortunately, William has been doing well on this medication with no side effects that we can see.

William has also been battling an antibiotic-resistant bacteria for the past six months. He had some tough rounds with antibiotics, and we are doing everything we can to help him to eradicate this. William is a fighter and he has been handling the trials of CF well.

The nurses are always impressed with how well William does during his appointments such as getting blood drawn, his yearly xray, and his throat cultures. The throat culture is his least favorite since it gags him, and he still does well!

William struggles the most with the digestion issues that come with CF, but we are managing them the best we can. His lung function tests have been awesome, and he is also growing well. Another milestone that William hit was that he now uses a mouthpiece for one of his nebulizers instead of a mask that younger kids wear.

William is managing his own medicine now (under his parents’ supervision). He knows what pills to take and when, and only needs minimal reminders. He takes from approximately 7-15 pills at each meal every day. He also continues to set up his two airway clearance treatments everyday, and start those independently as well. William still does school during his morning treatment and then plays with his sister and little brother by his side during his evening one. William also understands the importance of eating healthy food, even though he doesn’t always love his choices. He still does it and is doing a phenomenal job with taking care of his body.

It’s not a problem for William to go to his four doctor’s appointments a year. He has a very kind, knowledgeable, and welcoming CF Care Team at UNC. It also helps that during these visits William and his family get to stay with their kind, generous, and extremely hospitable aunt and uncle who live near UNC. William gets so excited for these trips because of the fun he has staying with them, and the love they pour out on him, and all of us. There is always something fun to do, and that helps make the quarterly visits an exciting adventure instead of something William dreads.

William still loves to keep busy with his favorite activities, which are riding his bike, rollerblading, and jumping on the trampoline. His adventurous side has him riding up and down hills as fast as he can get his bike to go and attempting flips on the trampoline. He has also started showing more interest in some sports like soccer, baseball, and basketball. He loves to be outside, but when he is inside he loves building with Legos and playing with his remote control cars. He is a curious boy who is fascinated with electricity and figuring out how things work. We are grateful that he has an abundance of energy and likes exercising since physical activity is extra important when you have CF.

William just turned seven years old, and with that age comes a new level of development. He is noticing more and more that he is “different” and that CF is very rare. He doesn’t want just anyone to know that he has CF, and he certainly does not want the attention or to talk about it to others. We are trying to balance honoring his genuine and real thoughts and feelings, and showing him that there is nothing to be embarrassed about. We want William to be “William”, not “William with CF”. We look to God for guidance with this and to our family, friends, and community for love and support as we continue on this ever-changing journey. We still have not spoken about prognosis to any of the children, and instead focus on enjoying everyday that God gives us as none of us know when it will be our last. We are grateful for the hard and necessary lessons that William’s CF continues to teach us, and pray for the strength and resilience to parent him the best we can so that one day William will be able to manage his own CF in a healthy way: physically, mentally, emotionally, and spiritually. We can’t do it alone, and we are forever grateful for each one of you, especially the ones who actually took the time to read this to the end. ;-)

We love you and are grateful for you,

Dan, Colleen, Cecilia, WILLIAM, and Jonathan

2022

William’s story this year can be summed up with the popular saying of, “No news is good news”. He has been doing extremely well! The exciting news is that he eradicated Pseudomonas last year after fighting it for ten months! It was a lot of extra treatment time and medicines, but he knocked it right out of him with hard work and determination. William is continuing to do well on his lung function tests. We are currently preparing William’s body to start Trikafta later this year. Trikafta is a Cystic Fibrosis medicine that has shown significant positive results for many CFers.

William loves to be active and play outside riding bikes and jumping on the trampoline. Not only does he enjoy these activities, but they are very beneficial for his health. As we were taking a family hike a couple of months ago, William commented that he thinks he's getting stronger because he is able to walk longer distances without getting tired.  He does not let his CF get in the way of him living life.  He still does his two daily treatments very well and with very little resistance (most of the time). William has started taking the responsibility to retrieve and count out his own enzymes before every meal. We are working on giving him as much independence as possible with the daily management of his disease.

William has also been showing a lot of interest in woodworking, so he assisted Dan in making a cart for his vest and nebulizer compressors shown in the picture. He measured and cut all the wood, screwed and glued the pieces together, and even applied all the stain. William loves tools and learning how to build!

We have noticed a new development in William’s processing of having CF, and that is asking if other kids also have CF. We will be around others and he will randomly ask if we think any of the other kids have CF too. It is interesting to witness this mental growth, curiosity, and processing that is going on in William’s mind right now. We welcome his questions and let those guide how much we tell him at any point in time. We are giving him age appropriate information about his disease and building on that as we go. Cecilia also loves to read some cystic fibrosis children’s books to William, which is so precious to see them sharing this experience and learning together. We are so fortunate to have them both!

We are fortunate that there is not much going on in William’s CF life at the present time, and we understand that that can change at any moment. We are grateful for every day with William, and we will continue this long fight day-by-day and do anything we can to support his body, mind, and heart. We are grateful for each one of you who continue to help and support William, and our whole family, as we continue this journey. Feeling your support and love means more to us than we can put into words. 

2021

2020 was a year of tears for many. There have been many tears shed in our family during these last five years, but they have not all been from sadness or fear. There have also been tears of joy and gratitude. Tears when I see my daughter curled up on the couch with her brother, shoulder to shoulder, reading him a story during his treatments. Tears when she takes her time to read or play with him because he loves being with her and she cares so much for him. Tears when my friends tell me that they have started a business and will be giving part of the proceeds to the CF Foundation, because they want to help in some way and only wish they could do more. Tears when William performed like a rock star on his first lung function test! Tears when I receive an e-mail from William's CF doctor on a Saturday morning, answering my questions and giving me the most amazing support and encouragement. Tears when others have tears with me and show their love and support through their words, encouragement, and actions. I am grateful for these tears and experiences of love and connection.

2020 also brought much joy and laughter in many ways. William had an exciting year filled with growth and adventure. He loves playing outside, riding his bike, jumping in puddles, getting dirty, and playing with anything with wheels! He is quickly learning to read and write, as well as perform some basic math. William spends his morning treatment completing school tasks and this works very well. His evening treatments are always spent playing with Cecilia. Cecilia is his number one playmate and he couldn't be happier. William had some major milestones with CF this year as well. Last August he took his first lung function test at 4.5 years old. The doctors didn't have high hopes of his performance because of his age, but William tried anyway, and he nailed it! William has the lung function equivalent of a healthy 10 year old! His doctors were extremely impressed. He performed just as well in December. William also still does well taking his 25+ pills a day, along with the other vitamins, supplements, nose sprays, etc. we ask him to take everyday! William also had his first camping experience in the fall and his first outdoor treatment!

Not all of our new experiences were welcome this year. William's throat culture showed Pseudomonas for the first time last summer and we have been battling this bacteria since. For William's whole life (past and future), he has two breathing/vest treatments a day that are 40 minutes each. Pseudomonas requires an inhaled antibiotic that adds another 25 minutes onto both his morning and evening treatments, which makes for over two hours of treatment every day. Due to the persistence of Pseudomonas, it is extremely difficult to eradicate in CF patients. William has been on a 28 day cycle of on again/off again inhaled antibiotics since September. He has been handling this routine extremely well! He just started his fourth round, and when I told him we were going to be starting this again he said, “That's ok, I like the extra treatment because we get extra reading time then.” My heart melted during this amazing moment of William showing such resilience and acceptance. I felt so proud of him.  We are so proud of William and the values he is developing.

Our wishes for William's future are:

to always be admired for his strength, instead of pitied.
to rise when he falls, and have the resiliency to keep going in spite of the challenges he may face.
to be committed to his health and not just do what is easy.
to always find gratitude instead of the “poor me” mentality.
to always have the courage to be a fighter and never slip into being a victim.
to enjoy every moment he is given, instead of spending his time in anger, fear, or worry.
to be a free-thinker and follow his own heart and mind, and not follow blindly.
to understand that sometimes life isn't good or bad, it just is,
    and he will make the most of what he has.
to always have the wisdom to bring himself back to the roses when he is caught in the thorns.
to believe in himself, instead of doubting.
to understand that he cannot control everything that happens,
    but he can control how he responds to it.
to have a supportive community for his whole life, and not think he must bear this burden alone.

“Let me not pray to be sheltered from dangers, but to be fearless in facing them. Let me not beg for the stilling of my pain, but for the heart to conquer it. Let me not look for allies in life's battlefield, but to my own strength. Let me not cave in.” — Rabindranath Tagore.

We personally do not believe that you can blow out a candle or see a shooting star and have a wish come true. These wishes we have for our son will come with perseverance, determination, patience, and practice every day of our lives. As I said a couple years ago, it takes a village, and with your support and love, together we can help to make these wishes come true for William.

We are honored to walk this journey with William and are grateful for his gift of presence, and we hope you are too! Thank you for your love and support; we couldn't do it without you!

Most people we meet have heard of Cystic Fibrosis, but have no idea what it is. Until five years ago, neither did we! Approximately 1,000 new cases of CF are diagnosed each year. Since 1938, when CF was first recognized, the life expectancy has sky rocketed from just 5 years old to 46! It is very sobering to think of William being 5 years old now and where he would be without his CF care and medicines. Due to research, testing, and new treatments for CF, there are now more adults than children living with Cystic Fibrosis in the US. In 2019 the Cystic Fibrosis Foundation invested $160 million for research. This gives us hope that new medical technologies will be found in William's lifetime! Your support means more to us than we could ever put into words, and our hope is that the Cystic Fibrosis Foundation could turn your support into added years for CF patients like William!

With Love and Gratitude.

William, Colleen, Dan, and Cecilia

2020 - This is a different kind of year for all of us.  We are grateful that William is healthy and has been doing very well.  Since we are a family with CF in our daily lives, we are no strangers to social isolation and avoiding sickness, so we have been doing ok during this global time of distance.  William has been learning and growing, and he keeps us laughing every day!  William is now setting up, starting, and putting away his own treatments twice a day, and he is learning when to take his pills on his own.  He understands that he has CF and that he will be a fighter and a warrior!  William has also been keeping active and working out his lungs by running around and playing with his sister, Cecilia, who is one of William's biggest and brightest supporters!  Cecilia has been asking more questions about CF and is always by William's side.  Her love and support for him is so strong.  She even reminds him to take his enzymes sometimes, and loves spending his evening treatments with him.  William has his school lessons during his morning treatments. 

William likes jumping on his individual trampoline, swinging, blowing bubbles, playing catch, singing and dancing, chasing the chickens, playing with anything with wheels, hiking, playing in water, playing in the garden, climbing, and riding his bike.  He does love to eat, but not necessarily what we serve him all the time.  :-)  He takes his medicines, vitamins, and supplements with no complaints, is a pro at swallowing pills, and is a saint with all that we ask him to take and do every day.  William's kindness, loving nature, and strong-will are traits that we are excited to witness now and in the future.  We are working with him on becoming more independent and his ownership over this disease that will always be with him.  We are so proud of the strength and courage that he shows us, and we are grateful to be on his team.  We won't back down and we won't give up, and these are lessons that William is learning and will be able to carry with him throughout his journey.    

Unfortunately we cannot come together and walk this year, but you are all in our thoughts as we navigate this world and situation together.  We continue to learn about resiliency, love, trust, and connection as the world keeps changing.  Thank you for your continued support for William and we hope we can see you and give hugs again sooner than later.  Until then, air-hugs will have to do.  We love you and we are grateful for your love and support, and for being a member of Team Will-da-Beast!  

2019 - February 28, 2016, my first baby boy, William, was born. The first words I spoke to William were, “We did it!”. William, Dan, and I were a strong team that day. When William was 12 days old I received a call from his pediatrician telling me that UVA wants to see us the following week because William is showing two mutations for Cystic Fibrosis. I said, “What is Cystic Fibrosis?” The doctor's reply was, “I do not know a lot of details because I haven't seen this for years, but it has to do with an imbalance of salt.” Within a week Dan and I learned that there is A LOT more to it than that. All I could do those first few nights during the night-time feedings was repeat, “Cystic Fibrosis” over and over in my head, trying to get it to sink in and hoping to wake up from this dream. With a little research we found out it was an inherited disease that causes severe damage to lungs and the digestive system, extremely unlikely that he will be able to have his own children, and many other complications that go along with the disease. It affects the lungs by making mucus thick and sticky making it hard to breathe and prone to serious infections. It also makes it difficult for him to absorb fats, gain weight, and get the nutrients people need in order to be healthy. I stopped reading after learning that the average lifespan for someone with this disease is 37 years old. It is devastating and paralyzing to hold your new born baby in your arms and think about the possibility of what his future might hold.

Over the next months we met with treatment teams, endured 4-hour long doctor appointments every month, and learned about medications and treatments. Every appointment was one more medication or another part of his treatment added on, and one more time having to try and find our “new normal” all over again. Our one month old needed treatments twice a day that consisted of pounding on his chest and giving him more medications than we ever wanted to give our child. A major milestone for him was being big enough to wear a vest which vibrates and breaks up mucus, something he will need to do for the rest of his life. When he is healthy, he uses two nebulizers twice a day to take medicine and needs to take enzymes, which he started swallowing at 2.5 years old, before he eats anything. Although he now will lead us on a game of chase, sometimes yelling “No!” when we want to start his treatment, he always does it and is mostly accepting of that time. The doctor explained that these treatments do not help to make William better, but they help him not to get worse. There is a lot of research being done right now to find ways to actually improve and make people living with CF better so they will not have to endure the infections and inflammation as they did years ago. There are some CF people happily living into their 40s! I try to focus on living day to day because anything else seems impossible.

We have watched our son grow into a little boy who loves cars and trucks and making people laugh. We have watched his older sister help give him his treatments, after practicing on her dolls for years. My intention is to raise awareness of this disease that I knew nothing about a little over three years ago. I also want to start weaving a strong support system for William, and our family, so that we will stay strong in the years to come with however the cards will fall for William. I want to strengthen and add to the team we had on the day William was born.

It takes a village, and we are asking you to help William keep fighting against this rare disease and keep showing him why this life is worth fighting for. He will need a lot of love, support, and skills in order to do this. That is why our team name is Will-da-Beast. He is a beast, he is a fighter, and we are never going to let him give up. William has not let this disease hold him back from being who he is; a spunky and mischievous toddler trying to figure out the world. We hope that medical advancements will continue to develop and be able to offer William a fulfilling and longer life.

William is more than his CF; he is a growing boy filled with curiosity, a wonderful sense of humor, and a very strong-will! CF will always be a part of William's journey, and he will need a strong community of love and support to keep up his fight and develop his inner strengths. With your help, he will thrive beyond the challenges he will face. Your love and support give us strength and hope, and is all I could ask for. I appreciate you listening to our story and thank you for being there.

Love,

Dan, Colleen, Cecilia, and WILLIAM

There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, and friends who struggle every day just to breathe. I walk for them. Will you join me and support my fundraising goal?

Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We’ve come so far, but there’s still so much work to do. I will not stop striding until all those with cystic fibrosis have a cure. Will you join me? Please consider donating to my Great Strides fundraising campaign today!

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