For nearly 25 years, Plano Fire Captain Scott Mallen has taken part in the MDA Fill the Boot campaign — a program in which fire fighters in hometowns across America take to the streets to fill their boots with donations and raise funds to help kids and adults with muscular dystrophy live longer and grow stronger.
It’s a cause Scott knows is important, and he’s always been happy to lend his support to raise money for MDA families. But he never had a personal connection to MDA.
That is, until everything changed in the spring of 2014.
“I never imagined, in all the years I filled the boot, and will continue to fill the boot, that I’d be filling it for my own son … for his future,” says Scott. “It’s pretty sobering.”
After the family returned from a vacation in late 2013 — during which his then 11-year-old son Chandler ran around and acted like the carefree kid he was — Scott noticed Chandler was having trouble getting on the bus to go to school. Chandler put both hands on the steps to get his legs up or used both hands on the rail to pull himself up. Over the next few months, he complained about pain and weakness in both of his legs and had lost strength, flexibility, and some coordination and agility in his legs.
Chandler’s parents knew something wasn’t right and called their local MDA office, which helped set up initial diagnostic testing at the MDA Care Center at the Children’s Medical Center of Dallas. After a few months of tests, biopsies and many doctor appointments, the cause was narrowed down to juvenile dermatomyositis (JDM), a neuromuscular disease that involves inflammation of the muscles or associated tissues, such as vessels that supply blood to the muscles.
“Coming home from one of his doctor appointments, Chandler asked me if he was going to lose the use of his legs, and I was so taken aback I nearly had to pull over to the side of the road. Without skipping a beat, he answered his own question with such determination and said ‘Well, don’t worry even if I do, I’ll never stop trying,’” remembers Scott.
A will to live unlimited
Because the family addressed the symptoms early – before any major cell damage — and Chandler
responded so well to the treatment, he is now in “clinical remission” and managing symptoms with medication two years after his diagnosis. He is back to walking, even running, and doing all the things he loves. Between playing the trumpet, biking, swimming, fishing, hunting, hiking and doing anything outdoors, Chandler’s passion for living life to the fullest is contagious.
“It’s just the kind of kid he is,” explains Jennifer, Chandler’s mom. “If he can’t physically participate, he participates in every other aspect of the activity.”
Chandler has served as the bat boy for his younger brother Caden’s baseball team, attending every game and every practice. Caden has been, and continues to be, a champion and huge support system for Chandler. “Even though Caden is the younger brother, he acts in many ways as the older brother by helping Chandler in so many ways,” explains Scott. “Whether it’s helping Chandler ride his bike or even carrying him when he needs it, Caden is always willing to help Chandler with anything he needs. Both our boys know it’s their number one job to look out for each other, and they take that role very seriously.”
Chandler is also a member of his school’s football team, serving as the ball boy, manager assistant and any other duty he can find, from loading the buses to following his coach out onto the field when a bad call is made.
“I love people and I love to help people … and my legs are doing great,” Chandler says.
Chandler’s positivity and passion hasn’t gone unnoticed at school. This year, he received a varsity basketball jersey, signed by the boys and girls varsity basketball teams. “The jersey was given to him as recognition for his dynamic personality and to award him for embodying the idea that anything is possible,” Jennifer says. “He’s an absolute hero to his teachers and classmates, and we are so proud of him. For Chandler, every day is a good day, and he’s truly an inspiration to us all with his can-do, will-do attitude.”
“There are so many diseases in MDA’s program,” says Scott. “We’re fortunate that we caught Chandler’s JDM so early and that his is so treatable. It doesn’t negate that you have a kiddo that has a disease that’s going to affect him the rest of his life, but we’re very fortunate. A lot of things that used to seem like a big deal seem trivial now. This journey has given us a grounded perspective on life.”
A fire fighter in the making
The eighth-grader has dreams of becoming a fire fighter like his dad. He lives and breathes the Plano Fire-Rescue Department IAFF Local #2149 and knows his dad’s entire crew by their first and last names.
The fire fighters and entire Plano, Texas, community have rallied around the Mallen family, recognizing Chandler at their Fill the Boot events for his bravery and courage and committing to supporting him and MDA.
“My outlook and position, and the value and importance that I now place on the work we do for MDA as a Fire Service, has been forever altered and changed,” Scott says. “You appreciate things much more and don’t take things for granted. You never know what the next minute holds.”
Thanks to Chandler and the entire Mallen family for teaching us all what it truly means to live unlimited.
About the MDA and IAFF Partnership
Since 1954, IAFF has supported MDA with an unwavering drive and relentless passion. IAFF encourages locals across the country to participate in Fill the Boot events to support MDA families until a cure is found. Today, IAFF is MDA’s largest national partner, raising more than $583 million during the past six decades to support families with muscle-debilitating diseases and accelerate treatments and cures. In addition to organizing thousands of Fill the Boot drives in hometowns across America, fire fighters also dedicate countless hours every year to volunteer at MDA Summer Camp, where children with muscular dystrophy and related diseases experience a week of barrier-free fun while gaining confidence and independence — all at no cost to their families.