Singer finds right lyrics elusive for personal song

Blues musician Tammy Milo is struggling to come up with lyrics for a song about her son TJ. He's 5, loves Chevy Camaros, and has a terminal disease.

Timothy John O'Donnell was found to have Duchenne, the most common form of muscular dystrophy, in 2012.

Duchenne patients endure progressive wasting of their muscles and usually end up in wheelchairs by 12; eventually, their lungs and hearts fail. The genetic disorder occurs once in every 3,000 to 6,000 births, affects mostly boys, and has no cure.

"I want the song I write to sound hopeful," Milo says. "So far, I haven't been able to write anything good enough to explain how I feel. But sometimes it comes out when I sing."

During my recent visit, TJ and his brother Tyler, 3, cavorted in the living room of the family home in Cherry Hill's Kingston neighborhood. TJ locks his knees for balance and uses furniture for support to get around. He's so lively and personable, I'm barely aware of his limitations.

"He can't run or jump or ride a bike," Milo says. "But he's very determined to do things on his own."

"He's stubborn as all get out," her husband, Steven O'Donnell, says proudly.

O'Donnell, 40, met his wife in South Jersey blues circles about nine years ago. He plays guitar in their band and drives a tractor-trailer, and she works from home as a graphic designer.

But Duchenne takes up much of her time. On the advice of a nutritionist, she prepares all her son's meals from scratch. She researches possible treatments online, shares information with other Duchenne parents, and helps with fund-raising.

On Saturday, Sept. 27, she and her husband will perform during a 12-band, 12-hour concert at Red, Hot & Blue in Cherry Hill (www.keeptjwalking.org).

"A lot of these bands have played here over the years," the restaurant's general manager, Rick Poulos, says. "We want to pay homage to them and to the blues, and also help" TJ.

The local blues community is not alone in its support for the boy and his family. The 200-strong South Jersey Camaro Club has adopted him, and Duchenne, as a cause.

On Aug. 2, club members organized a fleet of Camaros to parade past TJ's house for his fifth birthday. They presented him with a customized, battery-powered, child-size Camaro replica.

The club also raised $1,700 for TJ during its annual car show Sunday at Mall Chevrolet in Cherry Hill.

"We're trying to pack as much as we can into his short life," club member Bill Kushina says.

If there's "a silver lining to this very gray cloud," in O'Donnell's words, it would be the outpouring on the boy's behalf. "Because of TJ," says Milo, "a lot of people have seen how great other people can be."

But Milo says it can be tough to be somewhere and see a mother with an older, healthy son. So she digs deeper into in her Duchenne work, while her husband takes out his frustrations pumping iron at the gym.

"She's much better at diving into all this than I am," says O'Donnell, whose wife calls him "the workhorse" keeping the family together.

"He's my son. I have hopes and dreams for the boy," O'Donnell says. "To see him not be able to do things. . . . The other day I asked him to hand me a tool, and it took him everything he had."

Music remains an essential part of their lives. Milo, whose stage name is B.D. Mylo, performs in public at least once a month.

At home, "I sing a lot of lullabies and other songs to TJ at night," Milo says. A favorite is Bob Marley's "Three Little Birds," the one with the verse that goes,

Don't worry about a thing

'Cause every little thing gonna be all right.