• BY J.R. ORTEGA - JRORTEGA@VICAD.COM
• Originally published July 14, 2009 at 6:45 p.m., updated July 14, 2009 at 10:21 p.m.

• Brittle bone disease

  Osteogenesis imperfecta

  A lack of protein collagen causes brittle bones. Symptoms vary from mild to severe. Symptoms include:

  Bowing or spinal curvature. This usually leads to a hunched back.

  Triangular-shaped face with broad forehead.

  ...

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Brittle bone disease

Osteogenesis imperfecta

A lack of protein collagen causes brittle bones. Symptoms vary from mild to severe. Symptoms include:

Bowing or spinal curvature. This usually leads to a hunched back.

Triangular-shaped face with broad forehead.

Whites of eyes appear blue, purple or gray.

Brittle teeth.

Barrel-shaped rib cage.

Short, small deformed bones

Source: U.S. National Institutes of Health

John Paul Perez has a different outlook on life. How can he not? He stands 3-feet and 1-inch tall.

The wheelchair-bound 26-year-old was born with brittle bone disease, a rare disease that leaves bones fragile and lacking protein collagen.

The disease affects fewer than 200,000 Americans, according to the National Institute of Health.

Despite the disability, Perez said, he is optimistic.

"I'm just like everybody else. I'm not going to say 'I'm a boring person' and just stay home," he said.

While some brittle bone disease sufferers are so fragile that touching them can break a bone, Perez can primarily take care of himself.

The inherited disease sparked his mother, Janie Sanchez, to research the family's medical history to find the disease's origin.

"They don't know where it comes from," she said. "His generation started it."

Doctors first predicted Perez would live to be 6 months old. At one point, he was the size of half a loaf of bread.

Today, Perez lives the life of an average 26-year-old with the exception of his wheelchair, he said.

"I'm grateful for that," his mother said. "He doesn't say, 'Well, I can't do it because of the way I am.'"

Perez and his mother have had their share of adventures, including visits to New York City and Miami.

When not with his mother, Perez hangs out with his cousins or a group of friends who care for him and know how to have fun, he said.

"Just because of the way I am doesn't mean I'm just going to stay at home and not have fun," he said.

Every morning, Perez sits up and rolls off his twin-sized, gel-top mattress. His aunt and provider, Tommie Flores, sets his clothes out and draws his bath. Perez lifts his arms, and his aunt lifts him into the tub and leaves.

"He's very active even though he's in that wheelchair," said Flores. "He doesn't let anything slow him down."

Flores began helping Perez when his mother suffered an aneurysm five years ago - a trauma that makes simple tasks difficult.

"I wish I could, but I can't," the mother said.

After his morning routine, Perez usually watches one of the more than 100 movies he's collected. He enjoys "Harry Potter" and the "Saw" series.

"I just love all types of movies," he said.

His day is usually spent at his Bloomington home with his mother. With no mode of transportation, the two count on Flores to travel outside the house.

Looking back, Perez said growing up was difficult, but his life has become easier as he aged.

"It's kind of hard," he said. "You've got your own little thing that you do."

While 4-and 5-year-olds were getting their first tricycles, Perez was getting his first wheelchair.

Most of Perez's childhood was spent in and out of hospitals undergoing orthopedic surgeries, he said.

To date, Perez has had more than 20 surgeries. He has metal rods in his legs and arms which give him more flexibility.

The rods also have spring-like mechanisms that expand as his body grows.

Along with the brittle bone disease comes arthritis and scoliosis.

Despite the disease, he only takes pills for acid reflux, allergies and back pain. He only visits his doctors at Citizens Medical Center when he's ready, he said.

"I go into Citizens and people know me that I don't even know," he said. "That's why I say that's my home. I'm comfortable there."

Perez graduated from Bloomington High School in 2001 and since then has lived for the first time away from hospitals.

Perez considered going to college to major in computer science, a subject he said he enjoys.

"I wanted to go but it would be a waste to go to college and get a degree because of my disability," he said.

Perez is confident he could get a college degree, but getting hired after graduation might be difficult.

It is times like those where Perez said he does get depressed.

"I've faced the facts - there ain't nothing you can do about it," he said. "I can't let it beat me, in other words."

Regardless, Perez is happy with how life is going at the moment, he said.

"I didn't raise him to be disabled," his mother said.

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