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Musician on a Mission

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BAMS Hero, Julia Russo Continues To Inspire & Raise Awareness

May 12, 2009

Last week, I spoke to a Brooklyn guy named Jimmy Russo, a Local 1 stagehand at the Metropolitan Opera House, whose life turned into a real opera on July 21, 2006.

"Until then, me and my wife, Roe, had a happy Brooklyn family with two beautiful daughters," says Russo, who lives in Marine Park.

That Friday morning, their daughter, Julia, 2, awoke with a drooping left eye. "We took her to the pediatrician," says Russo. "He saw there was something wrong and referred us to a neurological ophthalmologist in Staten Island."

Julia was vomiting regularly, and the specialist ordered a CAT scan and an MRI at Staten Island University Hospital.

"By Sunday, things seemed better," Russo says. "Julia had stopped throwing up. She wore an eye patch to help control the nausea, and we were sent home."

But on Monday morning, Julia began vomiting uncontrollably. Her right eye also drooped. A Lyme disease test proved negative. On Wednesday morning, Julia couldn't walk. Her eyes sealed. She was admitted to Methodist Hospital's intensive care unit, where she was given a brain scan and a spinal tap.

"On Thursday, doctors said Julia had encephalitis brought on by the common cold," says Russo. "Julia's immune system was compromised. There was nothing we could do but pray that her little body could fight it off."

On Friday, Julia was whisked to Columbia Presbyterian Hospital, where the Russos' parish priest, the Rev. Joseph Fonti, came to pray with them.

"It was life and death," says Russo. "Little Julia's whole body shut down. She was paralyzed. Even her face and tongue. She was developing brain lesions and was diagnosed with Guillain-Barré syndrome. She was treated with steroids and a plasmapheresis treatment."

Julia Rose Russo would stay in the hospital for the next three months, making agonizingly slow improvement.

"My wife and I basically lived in that ICU," Russo says. "Taking turns to be with our little girl. My job was fantastic. My boss, Steve Diaz, always accommodated my schedule so that I could see my sick baby."

Julia finally came home on Oct. 10, 2006.

"She began extensive speech therapy and started talking again," says Russo. "She started to walk again with extensive physical and occupational therapy. She had to relearn how to be a kid again."

But the Russos' roller-coaster ride was not yet over. By Dec. 20, 2006, Julia had suffered a relapse. She started losing her balance. Her eyes glazed. Back at Columbia Presbyterian, doctors discovered new brain lesions and said the Guillain-Barré syndrome had led to a pediatric neurological disorder called acute disseminated encephalomyelitis, or ADEM. Julia was given more steroid treatments, and was released on Christmas Day.

"It's a Christmas I'll never forget," Jimmy Russo says.

In March, another relapse sent the Russos back to Columbia Presbyterian. But this time, they were referred to Dr. Lauren Krupp, a multiple sclerosis specialist, who told the Russos that Julia's relapses suggested MS, which is extremely rare in a kid so young.

Julia was first diagnosed by Krupp with chronic ADEM, and suffered through four more relapses by July 2007.

"At that point, we started administering steroids at home," says Russo. "Dr. Krupp also prescribed MS medication to protect Julia's brain from damage."

The weekly Avonex shot kept Julia up all night with flulike symptoms. After four months, that drug started affecting Julia's liver and thyroid.

"Dr. Krupp switched Julia to a daily injection of Copxone," says Russo. "It changed everything. After a year, Julia is in kindergarten at PS 207. She's in a dance class. She plays T-ball. She rides a bike. She turned 6 on April 23. Last month, Dr. Krupp was able to diagnose Julia with pediatric MS after eliminating all other neurological diseases. And Julia walked in an MS Walkathon in Staten Island that raised $5,400."

Krupp, who runs the National Pediatric Multiple Sclerosis Center at Stony Brook Medical Center, is also affiliated with the Mayo Clinic, where she told country music star Clay Walker, himself an MS-battler, Julia's story. He posted Julia's tale on his Web site, http://www.claywalker.com, and personally donated $50,000 in Julia's name to Krupp's research center.

"Clay Walker, a complete stranger, visited Julia, sent cars for us, donated money in Julia's name," Russo says. "After the cameras were off, he wrote a second $50,000 check in Julia's name. I didn't know how to thank this amazing guy, so I did what we do up here in Brooklyn: I sent him two Junior's cheesecakes down to Nashville."

And Russo is now planning a fund-raiser at a Marine Park church in September to raise between $50,000 and $100,000 for Krupp's MS research center at Stony Brook. Russo is currently seeking donations of sports memorabilia to be auctioned at the fund-raiser.

"Not one penny goes to my family," he says. "It will all go to Dr. Krupp's research center, so she can help more kids the way she helped our beautiful Julia."

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