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Parents of sick kids seek hope at St. Petersburg hyperbaric clinic

ST. PETERSBURG — One sunny morning recently, Millie Galan-Aguirre pushed her 14-year-old son's wheelchair past an AMVET post and a tattoo parlor to a strip mall storefront called Chamber of Hope.

She rolled Manny inside and parked him next to a long, blue tube with a zipper along the top.

"Hi, Sunshine," she said, taking his hand. "You ready to go in?"

Soon the other mothers would arrive with children who had other problems. The boy with half a brain. The girl who nearly drowned. The teenager with cerebral palsy. Everyone seeking miracles.

There are no doctors in this unlikely outpost. No insurance needed. No fees. The only currency is hope — and Mark Fowler, the man who runs this place, tosses it around like confetti.

Fowler hooked Manny up to a lift that lowered him into one of the five hyperbaric chambers positioned around the large, open room. Millie climbed in and laid down next to him as Fowler zipped the top closed.

Inside, Manny breathed concentrated oxygen for an hour. Millie, 43, held him and thought about who he had been, what he could become.

Seven months ago, Manny could play seven instruments, including the violin. He was the math champion at his middle school. He was spending more time away from his home in North Port — at soccer practice or with his friends.

On Dec. 29, on a ski slope in North Carolina, Manny's heart suddenly stopped. His brain lost oxygen. Just like that, he was like a 1-year-old again. Unable to talk or walk or let his mom know what he needed.

Now, for the first time in the months since, she was optimistic. After 30 hourlong sessions in the chamber, Manny was starting to follow commands. He could lift his leg and bend his knee. He even pet a dog.

Later, when Millie got out of the chamber, Fowler told her: "He's got a good chance of walking again."

And she replied, because she needs to believe: "I have no doubt he'll be walking and talking."

• • •

The man behind the Chamber of Hope Hyperbaric Center for Children is a short man with intense blue eyes who sold lighting fixtures for 38 years.

He is the kind of person who develops passions and rides them hard. There was the time his 4-year-old son was rejected from a BMX racing team. Fowler, 59, started his own bike team and took it to a national competition. Then his daughter got into softball and he became an umpire.

His enthusiasm for the hyperbaric chamber started a decade ago when he became a prophet in the Selama Grotto, a Masonic organization that helps children with cerebral palsy. The group had purchased its own hyperbaric chamber and allowed children with cerebral palsy to use it.

Fowler's 10-year-old grandson has cerebral palsy. A little time in the chamber and the boy's seizures stopped. His clenched fists relaxed. He was more alert and smiled for the first time.

Seven years ago, Fowler persuaded his wife to put the chamber in their living room in St. Petersburg and invited other families to use it. A second chamber followed, and soon his living room swelled with children from all over the world seeking the free treatment.

Last year, the city got on Fowler for operating a medical facility out of his home. Three months ago, the owner of Coquina Key Plaza offered him a former pack-and- ship store. Rent is free.

A five-member board now manages the nonprofit hyperbaric center and its donations, about $130,000 a year. For the first time, Fowler earns a salary — $52,000 a year — in line with what a director should earn at an organization that size, according to Guidestar, a website that gathers information about nonprofits.

He has struggled with his personal finances, though. He said his lighting fixture business crashed with the economy. He owes the IRS about $80,000, which he says he is paying back. His home was in foreclosure until he got his loan modified.

This personal financial crisis, he says, has not altered his devotion to providing children with free hyperbaric therapy.

"We've had people with strokes nine or 10 years out unable to move an arm and a leg and they got up and walked," he says.

Type 2 diabetes? Fowler says hyperbaric therapy can regulate the pancreas and cure neuropathy.

Lyme disease? Fowler says many no longer have the disease within 50 treatments.

Autism? Fowler says kids start sleeping through the night, become more focused and calmer and start talking.

None of this has been proved scientifically.

In fact, there are people who have worked in hyperbaric therapy for many years, like Tom Workman of the Undersea & Hyperbaric Medical Society, who do not believe the portable chambers can offer this kind of progress.

"In my opinion, the therapeutic value of those devices," he said, "is more psychological than physiological."

• • •

Hyperbaric chambers were first introduced about 100 years ago to treat deep sea divers for decompression sickness.

In the 1990s, Medicare started covering the therapy for more than a dozen conditions approved by the Food and Drug Administration, including infections, carbon monoxide poisoning, crush injuries and burns.

Pressurized oxygen inside the chamber promotes healing of damaged tissue. Some proponents say it reawakens dormant cells though that hasn't been proven. But anecdotal evidence, from those who have used it, has prompted thousands to seek it out, particularly parents with sick children.

Today more than 1,000 hospitals and medical facilities in the United States offer hyperbaric chambers — up from 30 facilities in the 1970s.

Many have purchased their own portable hyperbaric chambers, even though the FDA has approved them only for treating acute mountain sickness.

One manufacturer said he sold 190 hyperbaric chambers to NFL players. Quarterback Tim Tebow sometimes travels with one. Singer Michael Jackson often slept in one.

But the portable chambers cost $20,000. Clinics sometimes charge $200 to $500 an hour for hyperbaric therapy.

And since insurance doesn't cover "off-label" uses of the chambers for conditions like cerebral palsy and autism and Lyme disease, it has generated a pilgrimage of sorts to the little hyperbaric clinic in St. Petersburg.

• • •

Behind the shaded glass of the Chamber of Hope center, as Millie cradled her teenage son inside a chamber, a mom from Tennessee chatted quietly with a mom from New Jersey in the waiting area.

The two moms were staying at the Ronald McDonald House and had been bringing their sons to the hyperbaric center every day for about a month.

"Oh hold on, I have something to show you," said Sarah Williams, 30, of Tennessee.

She dug through her purse, pulled out her cell phone. She held it up for Tracy Bean of New Jersey. There was a picture of Williams' 16-month-old son, River, who has cerebral palsy.

"He learned to drink with a straw for the first time," Williams said with a grin. "So that's huge."

Bean was envious, but she smiled brightly. Her 4-year-old son, Alex, was born with half a brain. With three days left in his month-long regimen, it was hard to see any change. Alex still couldn't walk or talk. She thought vaguely that she'd noticed him using his left hand more.

"I'm never sure if I'm so desperate," she said, "that I'm just looking for something."

• • •

One day last week, Millie arrived at the center with Manny for treatment No. 58. Another 20 sessions remained, but Millie could tick off a list of improvements so far.

He was able to put a leg in his pants, a foot in his sock.

He was able to shake hands with two fingers.

He could grab a blue ball.

He could stand with her help and bear some of his weight.

And the other day, as he watched a men's soccer game between Uruguay and Mexico, she said he grunted excitedly as a player approached the goal, "Uh, uh, uh," and then "Ah, ah, ah," when he missed.

Bean, the mother of the boy with half a brain, thought perhaps her son was making more eye contact with her and he was grabbing things more. But she had hoped for more. And back home in New Jersey, her husband hadn't noticed anything at all.

Times researcher Shirl Kennedy contributed to this report. Leonora LaPeter Anton can be reached at lapeter@sptimes.com or 727-893-8640.

Hyperbaric benefits and risks

Here's how it works. You enter a sealed chamber in which the pressure is increased. In a heavy-duty chamber at a hospital, the pressure could be equivalent to being 66 feet below sea level. In a portable chamber, it would be similar to 7 to 10 feet below sea level.

Inside the chamber, you breathe anywhere from 70 to almost 100 percent pure oxygen. The combination of pressure and oxygen allows more oxygen to be dissolved into the bloodstream, which can promote blood vessel growth and rebuild tissue.

Since 1923, there have been 63 documented fires in hyperbaric chambers of all kinds around the world. Most resulted when people took the wrong things into the chambers, like lighters or cell phones. In 2009, a woman from Italy and her grandson died in a Fort Lauderdale hyperbaric chamber when it caught fire.

Mark Fowler said the chambers at his St. Petersburg center are approved for use by the Food and Drug Administration in homes. The oxygen concentration inside these chambers is so low that it is unlikely for a fire to occur, Fowler said.

Though some in the hyperbaric medicine industry do have concerns about the potential for fires in portable chambers, there have been no documented fires in them.

Source: Staff, Undersea & Hyperbaric Medical Society

Parents of sick kids seek hope at St. Petersburg hyperbaric clinic 07/17/11 [Last modified: Monday, July 18, 2011 10:20am]

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