LYNN — Lynn’s Ryan Fila says that playing baseball is his favorite thing to do. He loves pitching and playing first base, and prefers playing the field to batting. He drove in a run in his Wyoma Red Sox’ 10-2 win over West Lynn in the annual City Series Little League tournament in Lynn last month, and his team went to the final before falling to champion Lynn Shore.
If you’d been watching Ryan legging out base hits in the City Series, chances are you’d never know that he’s spent most of his young life bound by crutches, leg braces, and even a wheelchair at one point. The 11-year-old has battled a condition called congenital pseudarthrosis of the tibia, which is defined as a ‘false joint,’ when a break in the bone fails to heal on its own, for the last 10 years.
The condition is very rare; it occurs in only 1 of 250,000 births, and generally first appears in patients under the age of two.
When Ryan was 11 months old, he was cruising around the house when he went down a step and broke his leg. His parents, Tim and Andrea Fila, brought him to the hospital, where doctors found lesions within his broken left tibia. The injury was concerning for doctors, and of course, for Ryan’s parents.
“Kids just don’t break their legs like that,” Andrea said.
The family headed to Massachusetts General Hospital in Boston right away. There were lots of possible explanations for the break, some very serious.
“We were there all night, it was one of the worst nights of my life,” Andrea said. “They sent him for bone scans, and they didn’t know what it was. It could have been cancer, it could have been anything.”
Then the thought was that Ryan might have Neurofibromatosis (commonly referred to as NF), a set of complex genetic disorders that affect almost every organ system, causing tumors to grow on nerves in the brain and throughout the body.
In more than 50 percent of cases, pseudarthrosis is linked with neurofibromatosis. It wasn’t until recently, within the last year, that Ryan stopped seeing the NF specialist; no other symptoms of the disorder ever surfaced. So fortunately, if anything about the situation could be deemed fortunate, Ryan’s left tibia was the only bone that seemed to be affected. But the bone was so riddled with lesions that at times, doctors couldn’t even tell if it was broken. One doctor suggested amputating Ryan’s left leg when he was around a year old, a common treatment for the condition. The thought was that it would be better for Ryan to grow up with the amputation rather than possibly facing it when he was older.
But Ryan’s regular doctor, Dr. Maurice Albright of MGH, wasn’t ready to go that route. The plan was to respond to breaks and fractures as they come for the time being. Casts and braces became a routine part of Ryan’s life.
“I can’t begin to tell you how many times he was in a cast,” Andrea said.
That remained the plan until about three years ago. Ryan broke his leg just a few months after another fracture had healed. But the fact that the bone was healing gave Dr. Albright the ability to perform surgery on the bone to implant a steel plate that straightened the tibia, which had began to bow out as Ryan grew.
“He’s amazing, he took bone marrow, a whole concoction to connect the bone,” Andrea said of Dr. Albright. The surgery has allowed Ryan to walk on his own, though he will require subsequent surgeries as he continues to grow.
But throughout the time he was confined to crutches and casts, Ryan never stopped being active.
“This kid wanted to be a kid,” Andrea said. “He was scraping up the floors with his brace, jumping around everywhere. It’s in his blood.”
When he was in second grade, Ryan had to use a wheelchair. But of course, that didn’t stop him from doing what he wanted to do. Andrea said his friends at Lynn Woods Elementary would play catch with him and do everything at his pace. Not that Ryan needed anyone to slow down for him.
“I’d play kickball in a wheelchair too, and I would try to get doubles,” Ryan said.
Ryan has been playing baseball for Wyoma since t-ball, and coaches always found a way to have him as a part of the team, regardless of his limitations.
This season, a year removed from another surgery and out of his protective boot, Ryan tried out for Majors. Red Sox coach Rick Anderson welcomed Ryan to his team with open arms.
“(Rick) is a phenomenal guy,” Andrea said. “He put (Ryan) on the mound, at first (base), wherever. And he didn’t do it because he felt bad for him, he did it because he has the heart to play and he saw it.”
On Opening Day at Reinfuss Field, Ryan was finally able to play his first baseball game with no boot and no restrictions. He drew a walk, and then showed off his wheels, taking second and third on passed balls. He then came home on a base hit, and slid into home with no issues.
“I’ll never forget it, there wasn’t a dry eye in the place,” Andrea said. “Everyone was cheering.”
“There are so many people from this league (Wyoma) that have been so supportive,” Andrea added. “I give so much credit to everyone who took Ryan under their wing, like Jay Newhall, Tony Luciano, Eric Dugan, Rick Anderson, Mike Nickolau … they just didn’t give up on him. There’s also people watching over him, and that’s huge, like the Miller family and Lynn Woods principal Ellen Fritz. We’re grateful for what we have.”
Ryan’s friends and family, including more than 40 cousins, have been a big support system as well. Andrea says that no one treats him differently, they just go at his pace.
For now, Ryan continues to just be a kid. He says he has no pain on a normal day, and he’s able to play sports such as basketball, flag football and golf, among others.
“He’s determined, and he’s a natural athlete,” Andrea said. “He’s come a long way, he really has. He’s thrived, nothing has stopped him.”
The condition will never go away; Ryan’s left tibia will never be a normal bone. But the Filas will continue to build on the progress he’s made so far, and keep taking it day by day.
“For this disease he has, he probably shouldn’t even be walking. It is very crippling for some,” Andrea said. “We’re blessed. We can get through it, one day at a time.”