Girl With Rare Disorder Finds Company

July 25, 1994|By Consella A. Lee | Consella A. Lee,Sun Staff Writer

Samantha Battaglia, the Brooklyn Park girl who has battled a rare genetic disorder her entire nine years, found out last week that she is not alone.

The spunky youngster, who has defied doctors' predictions that she would die shortly after birth, has Type 2 osteogenesis imperfecta, or OI, which makes her bones brittle.

Most children born with OI are given six months to one year to live, said Angela Fontz, her mother.

But last week at the O.I. Foundation National Conference in Baltimore, Ms. Fontz and her daughter learned about other "miracle" children like Samantha, after years of believing Samantha was the only person to live as long as she has with the disease.

"They [doctors] told me she was the only one, and here I find two parents. But she is the oldest one," said Ms. Fontz. "I never knew anybody else with OI," she said.

Ms. Fontz said she and other parents from the conference have been exchanging pictures of their children and the prayers they say for them. They also share how they make their children's lives better. One mother, who designed a go-cart so her child can get about, is going to pass along the blueprint, said Ms. Fontz.

Back home, Ms. Fontz works to make her little girl happy and comfortable.

Samantha cannot breathe without a ventilator attached to her through a tracheostomy tube in her throat. She communicates mostly through sign language and has the IQ of 4- or 5-year-old, Ms. Fontz said. Her legs are bowed and are the size of a 9-month-old's. Her arms are bowed too, and her fingers bend partially. Her bones refuse to grow and her organs are maturing slowly. She must be supervised 24 hours a day. Nurses visit daily to help care for Samantha, Ms. Fontz said.

After three years in and out of various hospitals, and six years as a resident of the Mount Washington Pediatric Hospital, Samantha came home seven months ago. Her bedroom is filled with stuffed animals and posters of characters such as Pinocchio. They represent the fairy tale life Ms. Fontz has tried to make for her daughter.

"She's happy with herself, and I've always made that a point for her never to feel any different," said Ms. Fontz.

Last month, Samantha and her family received an all-expense-paid trip to Walt Disney World in Florida from Give Kids the World, a nonprofit organization that provides free trips to children who have life-threatening illnesses.

While there, Samantha, her mother and her 7-year-old brother, Walter, went to the Magic Kingdom, Universal and MGM studios and Sea World. But the height of the trip was meeting Houston Rocket rookie star Sam Cassell.

"We got treated like we were celebrities. There ain't no way I could have afforded to give my kids that," said Ms. Fontz.

The bond between Samantha and her mother that started in the hospital nine years ago when Ms. Fontz refused to let anyone turn off her daughter's life-support system appears to keep the pair going.

"That's what I would say," said Pam Merkel, one of Samantha's nurses. "A loving mom to be there and take care of her and, of course, the man upstairs has to be looking down on her."

Ms. Fontz agrees. "My goal in life with Samantha is for other people to know we exist and for other moms to know that they're not alone."

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