NEW BRITAIN, Conn. (AP) – Linda Ruth Tosetti said her grandfather, Babe Ruth, never turned down the chance to help a child and now, 50 years after his death, she’s following in his footsteps.

Tosetti, a Durham resident, was at a recent Rock Cats baseball game not only to honor her legendary grandfather, but to share the billing with 4-year-old C.J. Farr to raise awareness about a little-known genetic disorder.

“My grandfather was all about helping children, so when the team asked if I had a charity I’d like to support, the first thing I thought of was C.J.,” she said, sitting in the home of C.J.’s grandmother, Marianne Farr.

C.J. was diagnosed with urea cycle disorder, a genetic disorder that prevents him from properly metabolizing protein, when he was just a year old.

Without the enzymes to digest protein, ammonia quickly builds up in the body, where it can cause brain damage and even death.

C.J.’s mother, Jenn Farr, said ordinary treats such as a hot dog are “suicide” for him. He can only have seven grams of protein a day or risk being poisoned by ammonia, so his mother orders special food on the Internet.

Since his diet is closely monitored, he’s only been in the hospital after common illnesses – which also wreak havoc with his protein levels.

“Any kind of illness can send his ammonia levels high: fever, ear infections, any kind of stress on the body and he goes into the hospital,” she said.

“When he was first diagnosed, I thought they said he had pneumonia. It took me a while to understand that they were saying it was ammonia and there was only one other child in the state with the disease.”

Doctors recently installed a port in his chest to make drawing blood easier, and he has a tube in his stomach for medications.

As C.J. runs about with his sisters, Hannah, 7, and Lexi, 8, his mother describes his antics like those of any other little boy.

He likes to dig holes and trots off to show visitors where he’d like to dig next. He has a charming smile, although his face is a little scraped from a bike fall. He attends preschool at Gaffney Elementary School.

“They treat him like a normal kid, and I’m convinced that’s why he’s just an average little boy,” said Tosetti, a family friend. Then, to the family: “It’s because of you guys.”

C.J. is one of the lucky ones, said Chris Farr, the boy’s father, because doctors have been able to treat the symptoms of the disorder without seriously affecting his quality of life. But it is impossible to keep him out of the hospital. He was in six times this year alone.

The family started C.J.’s Fund to raise money for the National Urea Cycle Disorders Foundation, which supports research and awareness of the disorder.

Tosetti said when she was asked to appear at Babe Ruth Day recently, she knew she wanted to get C.J. in on the act.

“My grandfather went to 18 orphanages and 18 hospitals to visit children during one three-month barnstorming trip,” she said. “He loved kids. It’s very natural for me to do the same.”

Although he died Aug. 16, 1948, seven years before she was born, Tosetti is well versed in her grandfather’s colorful history, including his exploits defying the baseball league to play exhibition games against teams in the Negro Leagues.

The Farr family sold 100 tickets to the recent game and was able to donate 50 percent of the price to C.J.’s Fund and the foundation.

During the game, baseball fans got awareness messages about the disorder and Tosetti’s mission to have her grandfather’s number retired with honor.

Tosetti and kids, including some of the Bambino’s great-great-grandchildren, have been collecting signatures for a petition to have his number when he played with the Yankees – Babe Ruth played as No. 3 – hung at every major league baseball stadium in the country.

“He saved baseball. It was a single-hit game with 11 home runs per season for the entire league, and then he hit 29 home runs himself in one season,” Tosetti said. “My grandfather is honored in the hearts of his fans every day. I want major league baseball to honor him too.”


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