Judah's Lions

Join our team and help add tomorrows!

There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them. Will you join us? All we need you to do to become a member of our team is click on the "Join our Team" button. From there you can make a donation and start your fundraising.

Cystic fibrosis is a disease that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults. It is a life-threatening disorder. It is not contagious. 

According to the CF Foundation's most recent Patient Registry data, the median predicted age of survival for people with CF is in the early 40s. In the 1950s, children with CF were not expected to live long enough to attend elementary school. This speaks a lot to the benefit that research and new treatments have had for Cystic Fibrosis. Our family hopes for a cure. We need a cure for Judah and others who suffer due to the disease.

Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.

Judah has been admitted to the hospital four times for respiratory "exacerbations". Three of the those times, he stayed in the hospital for at least ten days, being treated with IV antibiotics and increased respiratory therapies. He was admitted once for Gtube placement when he was 18 months old, and once for a partial bowel obstruction. Each time we leave the hospital, something changes for us, and our fight against this disease becomes more real. We try new ways to guard and protect Judah from illness, while still allowing Judah to experience LIFE to the fullest, but we always arrive back at the same place. We are helpless against this disease without the hope that new medications and therapies bring. Science has some so far, but I need it come further, for Judah, and for others with Cystic Fibrosis.

Judah is a lion, the bravest boy I know. This disease is constant suffering in many ways for Judah, but you don't see that in him. You see love, gentleness, life, strength, silliness, and adaptability. He just goes with it. He takes his pills. He does his treatments. He experiences pain and discomfort that he doesn't understand.

On the day of the walk, we take in this disease for all of the worry, pain, heaviness, and sadness it causes and will continue to cause. We take in the unknown future. We stand up to this disease with the support of you, our community. We walk, hoping for a different reality for Judah and those like him. We dare to hope for a cure.

For Judah, this disease means multiple visits to the hospital for check ups. It means taking multiple medications daily just to stay healthy. It means that a 16 month old had to take 4 pills before eating any food. It means he gets to eat as many French fries as he wants because his body needs those fatty foods for him to grow normally. It means he sits for breathing treatments twice a day (and more often when he's sick) in order to break up the mucus that's in his lungs. It means that he has a feeding tube currently because his BMI is not as the 50th percentile and hasn't ever been (There is a strong link between weight and lung health for people with CF). It means that when he gets a cold, we start to feel nervous, and even more so when we hear a cough. Lung exacerbations are only a step away, lung exacerbations that each stick with Judah, affecting his lungs. It means hospital stays, IV antibiotics, PICC lines, all things we never imagined experiencing or having to have our little one go through.

This also means that Judah will grow up learning what it's like to live life a little differently, expanding his capacity to love other people. Other than the NG tube on the outside, Judah is just like any other 16 month old. He loves to be outside, read books, chase things or be chased. He loves to dance to Let it Go (thanks Kady) and other songs. He is ridiculous. :) He always has a smile on his face.

By becoming a member of our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.

We hope to see you there!

Beth, Chris, Kadence, and Judah and Zoe

Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.