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Hernando family struggles to pay disabled son's expenses

Tania Burns, left, interacts with son Joey Burns, who suffered severe brain damage in a football accident nearly 5 years ago.

Courtesy of the Burns family

Tania Burns, left, interacts with son Joey Burns, who suffered severe brain damage in a football accident nearly 5 years ago.

BROOKSVILLE — Football did Joey Burns in at age 16.

He was playing flag football on Oct. 8, 2006, at Delta Woods Park with a group of teens from Christian Church in the Wildwood who were interested in launching a competitive church league team.

The game soon turned rough; tackling replaced grabbing at flapping flags. Joey was clobbered on one play, no one seemed to know by whom, and he hit the turf hard with his head.

He continued to play for 20 minutes, his mother Tania Burns recalled, but on his way home in a buddy's car, Joey began vomiting, then having convulsions. He was airlifted to St. Joseph's Hospital in Tampa, where tests revealed such severe brain damage, doctors gave him only a 10 percent chance of living.

Joey has been in a hospital bed or strapped into a custom-made motorized wheelchair since then. He hasn't taken a step, let alone catch a football, or spoken a word for nearly five years.

"He wanted to be a pro football player," said Tania. "He loved that football. He never knew that would be his last Sunday."

Over the years, as the family has struggled to care for Joey, the hits have just kept piling up.

His father, Ray Burns, lost his job as a tile contractor when the building industry collapsed in Hernando County. They lost their home in Brooksville to a mortgage foreclosure and, thus, their credit.

They've held on to a smaller three-bedroom two-bath home near Sunshine Grove Road, but now they can't pay the mortgage and the mortgage lender has refused to negotiate an adjusted payment schedule.

The worst blow, however, landed on Aug. 20 — Joey's birthday. The day he turned 21, his Children's Medical Service Medicaid benefits ran out.

The beleaguered family recently got a faint glimmer of hope. Ray Burns has found work in Pennsylvania, which offers extended medical coverage for patients like Joey. More importantly, he located a nursing home that accepts young people and those like Joey with permanent tracheotomies.

But getting there is the challenge. Joey's condition prevents him from traveling in conventional vehicles or aircraft, and medical transportation will cost between $6,000 and $12,000.

Ray has tried to save every dime, but he's only managed to pile up about $2,000. The family needs financial help, and soon, as the nursing home won't hold the space indefinitely.

"A bake sale won't do it," said Tania.

• • •

Before the accident, Joey was a happy-go-lucky teenager. He had attended Central High School for his freshman and sophomore years then was in a church-related home-school program the following year.

Afterward, he was hospitalized for months.

His mother was always at his side, sleeping on a roll-away each night. Ray was working at that time and helping to care for Joey's younger siblings, Christian, then 10, and Anthony, 8 at the time.

When Joey came home, he was unable to move, speak, swallow, breathe sufficiently on his own. He required a feeding tube, oxygen and came with a permanent tracheotomy.

Fortunately, Tania had taken out Medicaid insurance for the children once when Ray was out of work, so most of Joey's medical bills were covered. But not all. The family's savings soon dwindled and before long, Ray was out of work.

A friend in Colorado, from where the family had moved to Florida, found work for Ray there. He commuted: three months on the job in Colorado, two months home in Spring Hill.

Then Ray had a heart attack, followed by another, ultimately leading to triple-bypass heart surgery at age 50. He couldn't return to work in the thin air of the Rockies.

Tania's full-time job is caring for Joey. Although Children's Medical Service paid for in-home nursing, her assistance is essential.

Joey has to be turned in his bed every two hours to avoid bed sores and pneumonia. He is lifted into his wheelchair twice a day, then back to bed. Those chores require two people because of Joey's weight.

On one occasion, the visiting nurse and Tania were in the kitchen when one of the other children rushed from the living room where Joey reclined, yelling that he was foaming at the mouth. He had regurgitated and was strangling.

Now, Tania rarely leaves Joey's side.

Because he has turned 21, Joey's in-home nursing care has been reduced to 12 hours, daytime only. Tania grabs a couple of hours sleep then so she can remain awake overnight to tend to her son.

"His progress is very slow," she said.

Family friend Natalie Gillespie, with a disabled child of her own, has been steadfast with the Burnses. When Gillespie speaks of Joey, she sighs, but talks of what Joey can do rather than what he can't.

So does his mother.

"He can hold up his head now. It used to bobble like an infant's," she said. "He knows when you're there. He smiles."

He smiles at a TV show when appropriate. He smiles when little kids are around. "He gives me a smile when I ask him,'' Tania said. "He can move his left arm. He scratches his head."

• • •

Last year, family friends from Canonsburg, Pa., visited and told Ray of jobs there. The couple even offered him free room in their home. Ray's been in Washington County, Pa., since February, driving a petroleum truck, saving to put his family back together.

The nursing home that has agreed to take Joey has agreed to hold a place for him while his Pennsylvania health care papers are processed.

"We can't wait long," said Tania, "or he'll lose his place."

But Joey can't make the trip in a conventional way, he must use specialized — and expensive — equipment. The choices are daunting: An air ambulance at a cost of some $12,000; a ground trip in a medical RV with nurse staffing, pegged at some $7,000; or the family purchase of a used handicapped accessible RV with Tania serving as caregiver. She's found two suitable vehicles with low mileage at $6,000 to $7,000 each.

Choosing even the lowest-outlay transportation mode, Ray calculates the move with a rental truck for their furniture, fuel and the first-month's rent on an apartment would require up to $5,000. Ray has saved about $2,000 from his job.

Jeff Jacobs, family minister at Christian Church in the Wildwood, said the church has helped the family with financial aid but is now committed to nonprofits.

However, Jacobs, who has visited Joey weekly and helped with his physical therapy, said the church board voted last week to act as a repository for tax-deductible donations to Joey and his family.

The family prays and tries to stay positive amid their hardships.

"I still have hope," Tania said. "I still hope for a miracle."

Beth Gray can be contacted at graybethn@earthlink.net.

. Fast facts

How to help

Send checks to Christian Church in the Wildwood, 10051 Country Road, Weeki Wachee, 34613, with the memo Joey Burns, or send to Tania Burns, P.O. Box 12137, Brooksville, 34603.

For information, call family minister Jeff Jacobs Christian Church in the Wildwood at (352) 596-1388.

Hernando family struggles to pay disabled son's expenses 08/31/11 [Last modified: Wednesday, August 31, 2011 9:20pm]

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