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Elizabeth family gets early Christmas gift of care for ailing son

| Tuesday, Dec. 24, 2013, 9:07 p.m.
Jennifer R. Vertullo | Daily News
The Timko Family, from left, Autumn, Mara, Rex and C.J., are grateful for the Elizabeth Forward community's support this holiday season.
Jennifer R. Vertullo | Daily News
As one of several specialists providing palliative care, nurse LuAnn Carson turns games into therapy for Rex Timko, 6, of Elizabeth Township.

Autumn Timko had one thing on her Christmas wish list this year, and it arrived a few days early.

Timko, 38, and her husband, CJ Timko, 36, of Elizabeth Township are the parents of Rex Timko, a 6-year-old boy suffering from late infantile Batten disease.

It is a nervous system disorder that causes seizures, blindness and loss of muscle coordination. It's a rare, heartbreaking, fatal disease that moves quickly and has no cure.

Rex, who was diagnosed when he was 3, can experience as many as 250 seizures each day and has lost his vision, almost all of his speech and most control over his body.

This month, the Timkos learned that their insurance carrier, Highmark, planned to pull their home health nursing assistance, a service the small family has depended on since shortly after Rex's diagnosis.

“We were told he no longer needed nurses at home,” Autumn Timko said. “A letter said Highmark doesn't want families to become dependent on home care and that we needed to find alternate methods to care for our son.”

She said Highmark gave them 90 days to wean their son off of the home assistance program before the company would discontinue the service completely.

But when Rex's story was featured on a local news program, Highmark accepted the Timkos' appeal and granted the family an extension through the end of 2014.

For Autumn Timko, it's the best present she could imagine.

“We have a lot of family members who want to help, but they're not doctors or nurses,” she said. “And sometimes love just isn't enough.”

Autumn Timko, who owns a yoga studio in Elizabeth, and her husband, a steamfitter, have a daughter Mara, 9.

Originally from McKeesport and Munhall, respectively, they were on their way to a picture-perfect life in Elizabeth Township until Max started suffering from seizures and slowly seemed to be losing his sight.

Then on April 20, 2011, they learned Max had the obscure disease since birth.

“Like most people, we'd never heard of it before,” Autumn Timko said. “I think there are five kids in Pennsylvania diagnosed with late infantile Batten disease and, strangely enough, four of them live in the Pittsburgh area.”

Although doctors told the Timkos that Rex likely would live only 8 to 12 years old, they never dwelled on it. In fact, for the first year and a half, Timko said her son seemed to be doing relatively well.

“It didn't feel real for a while,” she said. “It was just a piece of information. Because looking at him then, he seemed totally fine.”

Though Rex could say only a few words and never strung together complete sentences, he still could play with Mara, be silly and watch his favorite movies, especially Pixar's “Cars.”

But over the past two months, Rex has experienced a huge decline in health, his mom said.

“In July, he could run around, play, see, laugh and talk,” she said. “But now that we're in December, he's bed-ridden; he can't talk, he can't move, he can't see and he can't eat. Nothing.”

On top of that, Max has developed ataxia, a severe inability to coordinate movements.

“When he moves his hand, it almost looks like Parkinson's disease,” Autumn Timko said. “He can't move much anymore, but when he can, he can get tightness in his ankles and legs so bad that they can actually snap the bone. There's medication you can give him, but then he can't even smile. And smiling is one of the last things we have where we can see the Rex we love.”

As a result, the family and nurses constantly are repositioning him in an effort to decrease his medicine intake.

Still, CJ Timko said the family continues to see glimmers of the Rex they once knew.

“We can still get him to laugh,” he said. “He's aware of what's going on around him.”

Autumn Timko said that often can be heartbreaking.

“That's the worst part,” she said. “He's there and he's trapped in this body. He can't do anything. He can't move. He can't tell you if he's sick of this position or if he's hot or cold. That's why we try to anticipate his needs and try to make him comfortable.”

Mara, who enjoys looking through photos and videos of her brother when he was younger, said she does all she can to continue being the big sister he needs.

“When he was younger, he would always come in my room and mess everything up,” she said with a laugh. “But now I try to help out. I read him books. I play with him. I wish he could go to school with me so I could be with him all the time.”

Rex was enrolled in the Children's Institute of Pittsburgh, a pediatric rehabilitation facility in Shadyside, but his mother said the commute and Rex's deteriorating condition led them to pull him out.

He's set to attend an elementary school in the Elizabeth Forward School District that offers a life skills class.

“The school district is being amazing,” Autumn Timko said. “They're allowing his nurses to go to school with him to do his meds, keep his feeding schedule and help with his positioning. The district said, ‘What do you need from us? Tell us and we'll get it.'”

Timko said she's humbled by the outpouring of support she and her family have received from others in Elizabeth Township.

“They're always putting together benefits and fundraisers for us,” she said. “Everyone here has just embraced us — even the kids, who can sometimes be mean or make fun of him for being in a wheelchair. But not these kids here. They fight over who gets to hug and kiss him first. He loves being around people and none of them treat him like an outcast.”

With the Highmark issues behind them, at least for now, the Timkos are focused on having a happy Christmas, although family members will need to come to their house to see them.

“It's all peaks and valleys with this disease,” Autumn Timko said. “You're never really sure, when something goes away, if it's going to resurface or not. We kind of have to just hope for the best.”

In the meantime, the family is making the most of whatever time they have left together.

“We decided just to live the hell out of this life we have together,” Autumn Timko said. “We're not slowing down. Rex is still here and even when he's not, we're still going to be a family. We always will be.”

To learn more about Rex, his story and how to help, visit

Tim Karan is a staff writer for Trib Total Media. He can be reached at 412-664-9161 ext. 1970, or

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