Wednesday, May 4, 2016

Zachary Talley, 15, recently came home from a two-month hospital stay, but had to go back to the hospital just days later. His mother is struggling to care for him and pay his medical bills. A fundraiser is planned for March 30, 2014, to help the family. (Photo Supplied)

Zachary Talley holds his younger brother Ethan. Zach came home from a two-month hospital stay recently, but was back in the hospital just days later. Zach's family is struggling to care for him and pay medical bills. A fundraiser is planned for March 30, 2014, to help the family. (Photo Supplied)

Zachary Talley, 15, has ataxia-telangiectasia, a disease that causes him to lose control over his muscles as he gets older. Here, he plays Challenger Little League baseball at Baugo park in summer 2013. (Photo Supplied)
Family of Elkhart teen with rare disease is struggling to pay bills

Posted on Feb. 28, 2014 at 12:58 p.m.

In late December 2013, Elkhart mom Brigid Steinhagen decided she couldn't watch her son Zachary Talley struggle to breathe anymore.

"I just scooped him up and said, enough is enough," Steinhagen recalled. 

She took 15-year-old Zach to the hospital that night. Zach, who was in respiratory distress, didn't leave the hospital for two months.

Zach was diagnosed with a degenerative muscle disease called ataxia-telangiectasia when he was 2 years old, which means that he is losing the ability to control his muscles as he gets older.

He came home from the hospital on Feb. 19, on a feeding tube and a breathing ventilator. But that Sunday, he was rushed to the hospital again with a fever. 

"The hardest part is, his mind has never been altered," Steinhagen said. "He is happy-go-lucky. He loves to tell jokes."

In fact, she said, Zach often jokes with nurses at the hospital to take his mind off of what's happening. 

Steinhagen — a single mom with three other children — is wondering what she's going to do about medical bills she can't pay and a teenage son she can't care for on her own anymore. She has two jobs, but hasn't been able to work since December because she's been with Zach at the hospital.

She used to carry Zach to an upstairs bathroom to bathe him. Now that he has a ventilator and a feeding tube, she can't do that anymore. 

Zach's ventilator is attached to his wheelchair, meaning that the family needs an actual wheelchair-equipped van instead of the trailer they had been using to transport Zach's wheelchair.

Zach's needs

Boy Scout Troop 747 is hoping to raise enough money to help Zach get these items:
  • A handicap-accessible vehicle with a wheelchair lift
  • Renovations to his home so it can accommodate medical equipment
  • A new handicap-accessible bathroom on the ground floor
  • An updated motorized wheelchair

He will also need round-the-clock nursing care. 

Zach does have health insurance through his dad, Steinhagen said, and Medicaid. But it doesn't cover everything he needs.

To help out, Zach's Boy Scout troop is planning a fundraiser for the family.

Scott Shrock, the troop leader, said Zach's been a part of troop 747 since he was in third grade.

"When we first met Zach, he would get a cold and it would last for two or three weeks," Shrock remembered. "Now, he is getting a cold and his lungs are collapsing."

The other boys in the troop are used to Zach's health issues, Shrock said, but "this last time was unprecedented."

"The boys are a little affected by it this time," he said.

The troop's been as supportive as possible, even holding a meeting in Zach's hospital room when he was too sick to leave. Shrock said they will make sure Zach's able to participate in Boy Scouts for as long as he wants. 

They've planned a spaghetti dinner for 1 to 5 p.m. March 30 at the Elkhart Moose Lodge, 1500 C.R. 6. Tickets are $8 for adults and $5 for children 12 and younger at the door. Advance tickets discounted by $1 are available by calling 574-206-0390.

There's also an account set up for Zach at Inova Federal Credit Union, 619 C.R. 6 E., Elkhart; and an online fundraiser at Search for "Zachary Talley."