‘So many times they wrote him off’

Aid for Villa Park boy overcoming premature birth might be running out

By James Fuller
jfuller@dailyherald.com



Kelly Walker felt the warm glow of motherhood as she left her doctor’s office the afternoon of Jan. 3, 2004. Her ultrasound showed healthy twins.

A mounting terror erased that feeling when she went into labor at 11 p.m. that night. Mason and Grace weren’t due until April 11, Easter weekend.

“I thought, ‘There’s no way this is happening. They’re three months early. How can they live?’” Walker recalled.

Three years later, Walker finds herself asking that question about Mason again. The family’s insurance is tapped out. Mason no longer qualifies for nursing care through public aid. Soon, all the help Mason needs may vanish.

Now the Walkers are hoping a bowling fundraiser next weekend will help keep Mason moving forward.

Baby steps

Grace triggered the premature birth. Her placenta was 30 percent detached, torn and filling with blood. It was either birth or death.

Hours later, Mason and Grace entered the world in miniature. Their footprints were the length of two quarters with little nubs for toes.

Despite their size, there was relief.

The twins survived their tumultuous birth. The worst seemed to be over as the twins began their incubator lives and the path to going home to Villa Park.

Grace took that path. Mason followed another.

A week into Mason’s life he developed a bruise on the top of his right foot. Doctors attributed it to an awkward sleeping position.

A few days later, when it appeared to worsen, the bruise was traced to needle pokes Mason received during his care. His foot was treated with cream and wrapped in gauze.

It didn’t help. Mason’s tiny body swelled with so much infection his father, Joe, feared his skin would burst. Mason ballooned from a 2-pound premie into 10 pounds of sick child.

Doctors determined Mason had an E. coli infection stemming from a small hole in his intestines.

The mysterious hole healed, but the infection was so severe that medical staff told the Walkers they should take their son’s toys home and prepare for his death.

“They told me they’d never seen anyone that sick live,” Kelly Walker said.

Mason’s body wasn’t ridding itself of the toxins. He hadn’t urinated in a week. That’s when Kelly Walker had an idea.

She told the doctors to try putting his hand in a cup of warm water. After some hesitancy, the staff gave it a shot and Mason responded just like one of Kelly’s friends had done at an ill-fated teenage sleepover.

Mason’s swelling ebbed, but his right foot grew ever worse, eventually tearing open in several places. He received a pig skin graft to close the wounds, but the infection spread to his hip.

A year’s worth of failed attempts to save Mason’s foot followed.

“It was a mangled mess,” Kelly Walker said.

Amputation was the only option left. The infection also stunted the formation of Mason’s hip socket. His right leg would grow at a far slower rate than his left, requiring a prosthesis that makes it look like Mason’s calf was amputated as well.

Now the boy who shouldn’t be alive is 3 years old.

“So many times they wrote him off, and so many times he’s proven them wrong,” Kelly Walker said.

Helping hands

Mason is looking to prove everyone wrong again by learning to walk on his own with the help of therapists at Easter Seals and his nurse, Kathleen Brannon.

It’s Tuesday and that means speech, physical and occupational therapy.

A web of eight bungee cords strapped to a cage on one end and a harness on the other holds Mason upright. Mary Wyler coaxes Mason to perform various exercises while also finding enough entertainment to soothe the rambunctious toddler.

“I want No. 5,” Mason says.

It’s a reference to the “Thomas the Tank Engine” children’s show that Mason currently is obsessed with.

“No. 5 is James,” Mason says. Indeed, he knows all the characters by their names, numbers and faces.

Wyler strategically places the toy train so Mason must lean back and do a sit-up to reach it. Mason’s muscles are underdeveloped. He uses a walker pushed mostly with his left leg to get around. He can’t stand on his own. Yet.

“Are you gonna walk, Mr. Walker?” Brannon asks, shifting Mason over to a treadmill.

“I’m ready,” he replies.

The treadmill also has a harness. It lowers Mason to a standing position on the tread, which moves as slowly as 0.1 mph. Mason intersperses walking with other exercises, such as kicking toy police cars off the treadmill with his prosthetic leg.

This is remarkable progress for Mason. When he first started therapy he was so weak that sometimes he’d stop breathing while trying to lift his head.

Now he’s a little Godzilla on the treadmill, deflecting all would-be objects near his legs.

Once complete, it’s time for Linda Merry to concentrate on some of Mason’s fine motor skills. Mason’s nervous system also is underdeveloped. For instance, he began with no instinctual concept of the danger of letting go while swinging on a swing. Climbing over balls and mats requires a thought process Mason still is developing.

His nerves also are hypersensitive. Touching something like grass or clay can feel so unusual to Mason that it scares him.

“OK, big guy,” Merry says to Mason. “Are you ready to play?”

“OK,” Mason responds. It’s his favorite reply, even when it’s obvious he’d rather not do the requested activity. It’s also not unusual for him to request a hug now and then.

Mason concentrates on twisting lids, drawing vertical lines and pulling putty apart, all of which require coordinated muscle use.

“It’s not all about the legs,” Merry said. “It’s about maximizing strengths to minimize his weaknesses.”

Financial obstacles

Mason is much more capable than he would be otherwise thanks to all the care he receives.

But he’ll still need a lifetime of therapy.

Without some financial help, backward steps may be the first he takes.

One of the first things he’ll lose is Brannon, his nurse. Public aid won’t pay for her anymore because Mason is healthy enough to avoid a hospital stay without her. All told, it’s a $3,600-a-month cost the Walkers can’t afford.

“Without a doubt, if he didn’t have the therapy and extra help that he gets, he would just crumble and not be the same as he is today,” Kelly Walker said. “He has come so far. He’s come from the dead. It crushes me to think that he could go completely backward.”