Luke Bilbo has severe asthma. But he also has a lot of determination. Enough determination to run a marathon.
In Luke’s seven short years, he’s already been in the hospital more times than anyone can count. In kindergarten, he missed 54 days of school. When he did go to school, he had to wear a mask to protect him from germs and asthma triggers. He also had a spot on his lungs that only went away after a long treatment. The last thing his mother, Amanda Bilbo, thought he would do is run 26.2 miles.
When the Bilbos moved from Texas to Kansas in August 2015, Luke surprised his parents by asking to join the marathon club at his new school. The club encourages kids to run enough miles to equal a marathon distance (26.2 miles) during the school year.
“I didn't mention [the marathon club] when he started at his new school because I didn't think he could do it and I didn't want him over doing it,” said Amanda. “But a few weeks into school, he asked me if he could. Well, we have always lived by we aren’t going to limit him unless he gives us reason to. So we agreed. The very first club meeting he ran 2 miles and I probably had to pick up my jaw off the floor. I was amazed. I had been so worried but he was fearless; I just needed to trust in him.”
Luke paced himself when the club met, only running if he felt well enough. He also pretreated his lungs with his quick-relief inhaler before running. His asthma improved the more he ran, until he was able to run without using his inhaler.
Amanda also thinks other changes may have helped. In the past year, the family moved from a city to a small town where the air quality is better. They no longer have a dog and are extra cautious of winter triggers.
The Bilbos may never know exactly what helped Luke's asthma improve enough to allow him to run. It’s possible all of the changes helped, as well as their belief that Luke shouldn’t feel limited by asthma. When Luke finally completed the 26.2 miles at the end of the school year, it was a victory for the whole family.
“Leading up to the finishing day, he could not stop talking about it,” Amanda recalled. “He wanted to make sure I was going to be there. I felt like I was beaming with pride. The other parents probably thought I was a bit over the top. I could not wait to share with everyone. Even though he had been playing sports and running to get to this accomplishment, it was finally here. It felt like more than a finish line for a marathon. It felt like a finish line to asthma controlling our lives.”
Luke’s determination and his parents’ support is inspiring for his younger siblings. The other three children have asthma, food protein-induced enterocolitis syndrome (FPIES) and food allergies. Managing all of these conditions as a family can be complicated and stressful.
“I try to remember each child is different,” said Amanda. “Just because one [child] cannot do something doesn't mean the other [children] can't and vice versa. One preventative may have been great for one but does nothing for the other. We take it one day at a time and try to live our lives and not let asthma rule it. It truly takes teamwork and support because it can feel very isolating at times.”
Amanda copes with the support of her husband Andrew, friends, family, faith and a positive attitude. She also gets away for some personal time when she can.
“It is inevitable that my children will get sick, will struggle at some point with their asthma,” said Amanda. “But to let them live and be kids on the good days is what it is all about. I know when to slow [Luke] down if he is starting to struggle and have taught him the same now that he is 7. Teaching them to recognize their symptoms and advocate for themselves is giving them the power to push their limits.”