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Center Kicks In For Teen's Therapy

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By D'ANN LAWRENCE WHITE, The Tampa Tribune

Published: October 17, 2007

BRANDON - Her first clue that something wasn't quite right was a trail of fingerprints down the hallway of her home.

Valrico resident Carol Reed's son, Brett, then 12 years old, was having trouble maintaining his balance and would occasionally reach for the wall to right himself.

The next head's up came from longtime friend Laura Solin, a physical therapist, who noticed that Brett was walking awkwardly.

'We were participating in the Cancer Society's Relay for Life, and I could see that Brett was walking on his toes,' Solin said.

That was three years ago. Solin accompanied Reed and her son as they were referred from doctor to neurologist, and Brett underwent six months of testing.

'It was the DNA test that finally gave us the diagnosis,' Solin said.

Brett has a rare inherited disease called Friedreich's ataxia that causes progressive damage to the nervous system, including degeneration of nerve tissue in the spinal cord and along the muscles of the arms and legs.

'The hardest part was understanding what the neurologist was saying,' Carol Reed said. 'Laura knew enough to be able to explain it to me.'

The disease usually appears between age 5 and 15, and the first symptoms include difficulty walking. As the disease progresses, it spreads to the arms and torso. The feet and lower legs become numb and shrink, and the patient can't walk. Some patients lose the ability to speak, hear or see. Over time, breathing and heart problems frequently develop.

Suddenly, the child who loved the play baseball, soccer and football could barely walk without assistance. Carol Reed was heartbroken.

'The disease progressed rapidly,' she said. 'Pretty soon, he couldn't walk short distances without maximal support. It was so hard for a parent to see.'

Even more difficult for Reed was knowing therapy was available that could help her child and being unable to afford it.

Solin, along with friend and tennis partner at the Brandon Swim and Aquatic Center, Debora Coty, who works as an occupational therapist, discovered that one of the best treatments for Brett is aqua therapy.

'The patient is able to stabilize themselves better in the water and so he can exercise his muscles more effectively,' Solin said. 'On land, he's not able to support himself, so he can't do the exercises he needs to keep his muscles strong and stretched and prevent the disease from spreading so rapidly.'

The problem is, Solin said, most insurance companies won't pay for aqua therapy. And, to be effective, Brett needs aqua therapy three or four times a week.

'They see it as just playing in the water, not physical therapy,' she said. 'But I've seen great benefits from it, not only for Brett but for other patients. That's why I'm pushing for it.'

Not only is aqua therapy not typically covered by insurance, it's difficult to get access to. There is only one aqua therapist in the Brandon area, and she has a waiting list of clients. So Brett, now 15 and a freshman at Bloomingdale High School, can only see her one day a week when he needs to do aqua therapy two or three times a week to get the full benefit.

In addition, his insurance limits him to 60 physical therapy sessions a year, and the Reeds have long surpassed that number.

'The clock was ticking, and you can't slow it down,' Reed said.

'While you can't halt the progression of this disease,' Solin said, 'you can do things to stave it off and make the patient a lot more comfortable.'

Brandon Sports and Aquatic Center swim coach Mio Vasic stepped in to help. Brett had attended the sports camps at the center since he was a toddler and was well-known among the staff. When Vasic heard about his plight, he gave himself a crash course in aqua therapy and began working with Brett on Tuesday mornings.

'Nothing fancy,' Vasic said. 'We do underwater bench step-ups, upper-body exercises, cardiac activities and exercises to give him a better range of motion.'

But paying for therapy remains a problem. Up until now, Brett has gotten therapy through donations from Brandon Sports and Aquatic, carwashes organized by fellow campers at the sports camp and other fundraisers.

Friends of the Reeds are hoping to fund a year's worth of therapy with one major fundraiser, a fall festival called Benefit for Brett - or Be 4 B - from 10 a.m. to dusk Oct. 27 at the Winthrop Pole Barn, 11349 Bloomingdale Ave., Riverview.

The event will take place in conjunction with the Brandon Fresh Market and include pony rides, face painting, live music, a pumpkin patch, a petting zoo, food, raffles, a silent auction, karaoke and arts and crafts.

Vendor spaces are available for $35 for a 10-square-foot space or $75 for a 20-square-foot space. The deadline for reserving a space is Oct. 24.

For information, call Solin at (813) 671-0037 or e-mail benefit4b@gmail.com.

Reporter D'Ann Lawrence White can be reached at (813) 657-4524 or dlwhite@tampatrib.com.

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