News, Uncategorized - 21st May 2017

“For Xander, parkrun is where running is about other people, rather than cystic fibrosis”


Xander is a regular at College Park parkrun who recently reached his 10-run milestone. He stands out because he is only 4 years old, and while other parkrunners are recovering from their runs he is cheerfully running around with our parkrunning dogs. What nobody would realize from watching this exuberant boy is that running plays a key role in managing his cystic fibrosis. Xander’s mom, Tara, tells their story.


“Every morning the alarm goes off at 5:15am.  We have a few minutes to snooze, and then we need to get going. I make the coffee, and think through what we need to pack for today, while my husband makes breakfast. By 6am, we need to have started Xander’s treatments. Xander has cystic fibrosis, so his survival depends on a very careful regimen of treatments. Cystic fibrosis is a progressive, and terminal, illness, that causes the mucus made inside the body to be too thick and plentiful to be moved around naturally. The mucus that keeps our lungs moist is an urgent problem for a CFer, as it is too thick & heavy to allow breathing, and must be cleared away with medication & therapy. In Xander’s case, it also requires a very special diet, and Xander takes a number of pills to keep his digestive system working properly. With a high metabolism, and a body that is working fullsteam in order to breathe each minute, his caloric needs are through the roof, so the day includes at least 7 meals and 21 pills (so packing for the day includes a lot of food!)!


We start with two nebulized medications and a session of chest physiotherapy – it takes about an hour, so we use this as our family time together each morning. Xander loves reading and learning, so we are working our way through all kinds of “books with good facts.” After lung treatments, it’s time for a hearty breakfast of at least 15g of fat and at least 15g of protein, along with at least 6 pills. After breakfast, we exercise for lung clearance. On Saturdays, we get to join up with College Park parkrun for a run with other people, which is perfect for my little extrovert. The other days of the week, we head out on our own for our runs. Our first priority is lung clearance, but Xander is excelling as a runner, too, with aspirations of building up to 10 miles soon. We’ve made it to almost 7 miles, but with the weather getting hotter in the Washington DC area, we are backing off from increasing more until we have cool days again. Xander’s metabolism plus the extra work that his body is doing means he experiences the world about 10+ degrees hotter than others, so these 80-degree days are already sweltering for him.


Now, Xander loves parkrun for several reasons. First, there are other people to run with, and sometimes even dogs to play with. And second, the course is flat, unlike the trail system at our house. Third, since parkrun is a 5k, that means it’s a short run day! (But actually, as long as we aren’t late, we get an extra mile or so in by running from a far parking space to the gathering, and then another mile on the way back to the car, but with the breaks to socialize at the start & finish, he still perceives it to be a short run.)


And I love parkrun for several reasons, too. There are lots of factors that slow Xander down — heat, digestive system, difficulty getting enough oxygen, being a kid — but at parkrun the focus is not on competing or speed, so we run and we are encouraged. The out-and-back route means we get to see everyone, from the first finisher to the tail runner. For Xander, parkrun is where running is about other people, rather than cystic fibrosis. We have to run, every morning, regardless of the weather, or if it’s a holiday, or we’re not in the mood, etc.  But at parkrun, we can count on seeing other people — maybe a big group or a small group, but there’s always someone to say hi to, someone to cheer for, and someone cheering for us, and that gives us the chance to have a run that isn’t always about CF. Plus, what other running event welcomes 4-year-olds registrants? And dogs? And is free?? Definitely a win for us. =)


Tara M

Around 30,000 Americans live with CF.

The Cystic Fibrosis Foundation has some great resources for learning more about CF.

The Washington Post recently ran a fascinating story about two CFers on the University of Maryland lacrosse team, and why they need to keep a distance from each other.

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