Saturday, August 1, 2009

Young double amputee finds his calling helping others get the prosthetics they need

From CNN:

CHATTANOOGA, Tenn. -- An annual family fishing trip to the Florida keys took a bloody and life-changing turn for Jordan Thomas (pictured).

"It was a beautiful day and we were going to go out spear fishing that night," said Thomas, who was 16 during the 2005 trip.

But when he jumped into the water, the boat's wake dragged Thomas hard into its sharp, whirling propellers.

He immediately knew what was about to happen.

"I looked down -- my black fins were gone and all I saw was red just everywhere," said Thomas, an athletic teen who was captain of his high school's golf team. "But I had this unbelievable calmness over my body." Watch video of Thomas telling his story »

His father and mother, both doctors from Chattanooga, Tennessee, jumped into action.

"All of a sudden, my 16-year old, happy-go-lucky captain of the golf team was potentially dying," said Dr. Liz Kennedy-Thomas.

She worked to stanch the blood flow from her son's legs while his father rushed the boat to shore and fetched paramedics.

Thomas was rushed to a hospital where he spent the next two weeks -- undergoing several surgeries on what was left of his legs and, along the way, discovering what would become his life's work.

While there, Thomas visited other amputees.

"I just remember seeing so many kids who didn't have parents, didn't have health care," he said. "I just knew that the future was grim for them."

The top-of-the-line prosthetics Thomas was fitted with -- the ones that helped him return to the golf links -- cost about $22,000. He learned that many insurance plans only cover about $5,000.

That's especially tough on child amputees, who will outgrow several limbs before adulthood.

"I had no clue," he said. "It's one of those things, unless you're affected by it, you just don't know."

Thomas knew he was lucky. With a financially stable family, he'll always be able to afford good legs. He asked his family to give a donation to help others, but ultimately they decided to launch a fundraising foundation together.

"By the time we got home, we had bracelets -- all kinds of stuff," Kennedy-Thomas said. "The foundation was just sort of started by the time we got home."

The Jordan Thomas Foundation has raised $350,000 through bracelets, charity golf tournaments and cookouts. Some of that is paying for prosthetics for three children until they reach age 18.

One of them is Noah Parton (pictured).

The precocious 6-year-old born with a congenital heart defect had a complication with a tube inserted in his right leg, leading to an amputation above his knee.

His family's insurance would only pay for what's called a "stubby" -- a wooden artificial leg without a bendable knee.

"His first bendable knee ... didn't have a certain number or something that would apply and they refused to pay for it," said Noah's mother, Nancy Parton, who lives with her son about an hour north of Chattanooga, in Evensville, Tennessee.

Noah couldn't run and play with other children. And even day-to-day activities were tough.

"It was hard to put him in the car because his leg stuck out straight and I'd have my seat up as far as it would go and it would still hit the back of the seat," she said.

Thomas's foundation stepped in, buying Noah several knee devices -- a new one for each new leg he needs as he grows.

Now, his mom said, Noah is unstoppable.

"He loves to climb stairs now; he tries to ride bicycles," she said. "You name it, he does it.

"Take him to the park [with] any other kid; he'll just blow you away."

As Congress debates overhauling the nation's healthcare system, prosthetics are quietly getting some attention.

In May, Rep. Robert Andrews, a New Jersey Democrat, introduced the Prosthetic and Orthotic Parity Act, which would require insurance companies to cover prosthetics at the same rate they do surgery.

"It's pretty simple," Andrews said. "Prosthetic devices are not cosmetic. You can't walk without one or you can't lift something without one and I think one of the reasons people are so upset about the health care system in this country is they had hassles like this."

Seventeen states have passed similar laws, most recently Missouri. But amputee advocates say there needs to be a national law.

Kendra Calhoun, president and CEO of the Amputee Coalition of America, says there are 1.8 million amputees in the United States and at least 25,000 of them are children.

Calhoun said that with more sweeping healthcare legislation taking all the attention, "our biggest hurdle [for a prosthetics law] right now is being heard."

Some insurance companies have argued that premiums would go up for everyone if they're forced to cover prosthetics to the extent advocates want.

Advocates cite a study they say shows it would cost beneficiaries about five cents per month.

Meanwhile Jordan, who's now a junior in college, says he'd like to become a voice for otherwise voiceless children.

"I'd really like to move into advocacy, giving a voice to the amputee community and just helping as many people as possible," he said. "Just making a difference and letting these kids live normal and happy, productive lives."