With help of Children’s Hospital, Maryland boy without femurs forges ahead
By John Kelly,
At the moment, Roberto Deeds-Fuentes doesn’t seem to realize there’s anything different about him. The 3-year-old pads across the atrium at Children’s National Medical Center and climbs into his mother’s lap, the whole time counting from one to 10 in a singsongy voice.
“I figure once he gets to school, and other kids start pointing it out, then he’ll notice,” says his mom, Talia Deeds.
He’ll notice that he’s shorter than just about everyone else.
Roberto was born without femurs, the longest bones in the human body. This hasn’t slowed him down that much.
“I thought he would be in a wheelchair,” Talia says. She wasn’t sure she believed the Children’s Hospital orthopedic surgeon who assured her that her son would walk despite his disability.
As an infant, Roberto would look at other people as they walked. Talia thought he was filled with a sense of disappointment. She realizes now he wasn’t. He was scrutinizing them for clues on how to get around. Roberto didn’t do the “combat crawl” that so many infants do — he has no knees — and instead went straight to the “bear crawl”: up on his hands and feet.
And then — boom! — he started walking.
“He’s not a gradual person,” Talia says. “He all of a sudden starts doing it. When he started walking, I was like you’ve got to be kidding me.”
Roberto was a bit of a surprise to his parents. Talia had been told she couldn’t get pregnant without surgery or fertility drugs. At nine weeks she realized she was carrying Roberto. A later sonogram revealed that his legs hadn’t formed normally, a condition known as proximal femoral focal deficiency. Talia immediately started searching online for information.
“My concern wasn’t the disability,” she says. “My concern was the quality of life. I didn’t want him to be in a chair, not being able to communicate.”
Doctors told her that Roberto’s heart and brain were fine. “For two weeks I was stressed, then I said I can’t worry about it anymore. It’s not in my hands.”
Roberto was born 11 weeks prematurely. He spent time in the neonatal intensive care unit at Children’s and is a patient of Dr. Laura Tosi’s, the director of the hospital’s bone health program. Today, he has a winning smile and long hair that’s pulled back in a ponytail like his father’s. Doctors tell Talia that the tallest he’ll ever be is a shade over 4 feet.
“I know he’s not going be in the NBA or the NFL,” she says. “I want him to concentrate on his education, to be as smart as he can be, so he can take care of himself and not have to rely on anyone.”
Roberto seems eager to learn. He loves counting and reciting the alphabet and the days of the week. And Talia thinks there are some sports that might be right for him, such as gymnastics and swimming. As she was searching online she came across Travis Mohr from Pennsylvania, who was also born without femurs. Travis started taking swimming lessons at 5. A member of the U.S. Paralympic swim team, he competed at the Paralympic Games in Sydney and Athens, winning two gold medals, a silver and a bronze. He graduated from Drexel and is a civil engineer.
Talia got in touch with him on Facebook. “Travis said kids did talk to him about it at first,” Talia says. “His mom went into class and explained his condition. He didn’t have a problem after that.”
Talia is hoping that Roberto can be as resilient. He turned 3 on Tuesday, finally old enough to go to preschool. Soon he’ll be taking the bus three days a week from their Laurel home to the Frances Fuchs Early Childhood Center in Beltsville.
“I’m hoping my son keeps the same personality,” Talia says.
When she learned she was pregnant Talia didn’t have health insurance. She said that unbeknownst to her, her employer at the time hadn’t been paying the premiums. Finances have been tough since then. She didn’t need to worry about the cost of her son’s treatment at Children’s, however, because the hospital treats everyone, regardless of how much money they have.
Your tax-deductible donation can help ensure that other kids like Roberto can also be helped by Children’s. Please send a check or money order (payable to Children’s Hospital) to Washington Post Campaign, P.O. Box 17390, Baltimore, Md. 21297-1390. To donate online, go to washingtonpost.com/childrenshospital.