Meet Jaxton, son of Kate Axthelm and Colton Lovitt. This Brady native is a high energy, fiercely independent 2-year-old with an infectious smile who loves puppies, Elmo, and anything that involves being outdoors. Jaxton (or Jax for short) is not the CF kid. He is a curious, playful, charismatic young boy who happens to have cystic fibrosis. The difference is everything.

May is Cystic Fibrosis Awareness month, and Sharon Axthelm, Jaxton’s grandma, posts on Facebook daily to help the community learn more about CF and the challenges he will face. “The easiest way to describe [Cystic Fibrosis] is this: basically, there is a problem with the way the body off-loads its salt. This affects both sweat and mucus,” Sharon explains. “The body loses too much salt through sweat, and the mucus becomes thick and sticky.”

The lungs and pancreas struggle to work efficiently, as this thick mucus clogs up the normal functioning of these organs. It also creates an ideal place for bacteria to thrive, leading to possibly life-threatening infections.

In addition, his body cannot absorb nutrients well, and getting high levels of valuable vitamins, minerals, salt and healthy fats into his diet is essential. So, Jax’s life is a balancing act. On one hand, daily treatments with a percussive vest to break up mucus, precautions taken to keep him from being exposed to contagions, and finding nutrient dense foods that he will eat, and enzyme pills with each meal are part of his normal routine. It’s so tempting to be overprotective and keep Jax from doing anything that may potentially cause a setback. But on the other hand, he also needs to be able to enjoy life, play, participate in group activities, and interact with friends like any other toddler! Sharon commented, “Above all, we don’t want CF to overshadow who Jax is and what he can do. His mental and emotional health are just as high a priority as his physical health.”

The steep learning curve started back when Jaxton was diagnosed through a routine screening at about 2 weeks old. A call from the doctor which then led to more extensive testing produced many levels of shock, denial, and even a bit of fear from Jax’s family members. Sharon felt especially worried because her own sister passed away from CF at the age of 2, largely due to a lack of understanding of the disease and treatment options in the 1970s. After the initial wave of emotions passed, Kate, Colton and both sets of grandparents forged ahead to learn about Jax’s needs and special care. His mom, Kate, a recent graduate of Brady High School, said, “I was adjusting to life with a new baby when I learned that he would need so much more care than I expected. We have to prepare in advance how long it’s going to take to get his stuff together in the morning, to get his treatments done before he eats, or before we leave for the day.”

Jax is blessed to have a huge extended family that all live in the Brady area. Kate and Colton take on the lion’s share of his care, health decisions, and daily treatments. Both sets of grandparents, the Lovitts and Axthelms, are happy to get their time in as well. Being the first grandchild on both sides definitely has it’s advantages. Sharon added, “The great thing is, our families are all on the same page. We all work together to give Jax the best life possible.” Jax’s days are full of youthful discoveries, active playtime, learning, and most of all, loving support.

The challenges faced by individuals with CF vary greatly, but Jax’s doctors monitor him every three months for signs of other health concerns linked to CF, such as liver disease, diabetes, or digestive issues. Cystic fibrosis research and treatment continues to advance markedly since the inception of treatment in the 1950s. The life expectancy of patients affected increased from 10-years-old in 1962 to about 43-years-old in 2020. The discovery of a new drug called Trikafta, which could potentially increase not only longevity of life, but also vastly diminish the symptoms associated with CF, offers a bright ray of hope to the tens of thousands of people living with cystic fibrosis today. Jax’s age prevents him from being able to take advantage of this promising treatment currently, but his family is eagerly anticipating the research results which could result in a life changing future for him. To learn more, or to help with the fight to find a cure, visit the Cystic Fibrosis Foundation at cff.org. You can also follow Sharon Axthelm on Facebook to stay up to date on Jaxton’s Journey, and participate in the annual fall fundraiser for CF research.

As Jax continues through his adolescent years and into adulthood, his family chooses to focus on life. Helping him live every moment to the fullest, relishing each day, taking nothing for granted. In a way, a diagnosis like Jax’s is a rare gift. It forces you to slow down and savor. We humans tend to think of ourselves as infallible, with plenty of time to fulfill our dreams, passions, and goals. But the reality is, no one knows when our clock will wind down. Life is not guaranteed for anyone.

So, in a world where you can be anything, follow the lead of Jax’s family. Be present. Be aware. Be hopeful. Enjoy life.