Wish Book: San Jose boy with brittle bone disease needs wheelchair and standing frame

Nov. 27--When Isaac Ruiz was 3 months old, his mother was putting on his first pair of baby shoes -- the kind parents have bronzed as proof that life can sometimes be perfect -- and broke his tiny ankle in two. Isaac is 9 years old now and has broken more than 100 bones. All four limbs are held together by metal pins, one of which was lengthened just last week in the most recent of 10 surgeries he has endured in his short life.

Isaac was born with osteogenesis imperfecta, a rare condition also known as "brittle bone disease." He has all the same energetic impulses of a healthy little boy, with a body that is fragile as porcelain. "When he was first born, he would break his legs and his arms just by rolling over," says Raquel Ruiz, Isaac's mom, who recalls that bones weren't the only things he shattered. "It was definitely heartbreaking to see all that he was going through. When they're that age, all you want to do is protect them, and we couldn't even protect Isaac from himself."

Isaac is about to get a power wheelchair to help him zip around and engage with other children at school, but the cost of a lightweight manual chair that will allow him to exercise his delicate arms is not covered by his family's health insurance. This happy, intelligent youngster has the willpower to live life fully. He needs the help of Wish Book readers to give him the added wheel power to maintain his independence and spirited smile.

Even before Isaac was born, an ultrasound revealed he had cracked ribs and a broken femur, and despite the almost unimaginable ease with which he shatters, each new fracture is its own special trauma. "Since he was in the womb, all he knew was pain," his mother says. "Each broken bone hurt just as much as they would you or me. But even with fractures, we kind of had to guess because he was such a happy baby."

Despite a fierce stoicism that Isaac uses to shield his family from his own pain, he's been taking Vicodin since he was 3 months old, when a hospital technician applying an intravenous tube accidentally broke his arm. "As horrible as it sounds, everybody in the house has been a factor in him having a fracture," Raquel Ruiz says. "It's pretty traumatizing. But seeing how tough he is, I can't help but draw strength from that."

No parent dreams of having a 9-year-old with a high pain threshold, but Isaac does his best to put his mom and dad's minds at ease. "Sometimes I try to keep it from them if I hurt myself, if it's just a little," Isaac says. "But if I hurt myself really bad, I yell."

There have been other, less visible hurts. Relatives and friends of the family knew Isaac was excruciatingly delicate, so instead of the normal response to a newborn baby, nobody would pick him up. Ever.

Osteogenesis imperfecta is caused by a deficiency of collagen that interferes with the development of connective tissue. Isaac weighs 39 pounds, and is less than 4 feet tall. He got his first power wheelchair when he was 3, but after outgrowing that, he was restricted to a manual wheelchair his mother found on Craigslist last year. It hasn't been a comfortable ride. The new power chair will make Isaac's life easier, but the family vehicle will require an electric lift that can cost as much as $2,500.

During recess at San Jose's Graystone Elementary School, where Isaac is in the third grade, he is watched over by Julie Miller, who was hired by the school district as his aide when Isaac was in kindergarten. Another aide had been selected for him, but she backed out at the last minute when she discovered how fragile Isaac is. "She was terrified," Raquel Ruiz says. Miller was so smitten with him that she began going to the gym to make sure she would have the strength necessary to carry Isaac a long distance in her arms if there was an earthquake.

With the help of physical therapy, Isaac can already support about 80 percent of his body weight, and a standing frame ($4,000) will help with that.

Everybody who meets Isaac wants him to have all the things he needs, and the chance to realize his dream of walking one day without the chair. "He will always say something that brightens your day," says Nila Ruslen, Isaac's physical therapist.

In October, Isaac broke a finger just playing video games, and when his mom drove the family car over a pothole recently, with Isaac carefully cushioned in a special seat in back, it left him in tears with a micro-fracture of his spine. The family no longer takes him to a doctor every time he breaks something. "He's had a lifetime worth of X-rays," Raquel says.

But he's also had some good breaks. At 6, Isaac got impatient waiting for his mom to carry him upstairs, so he began climbing on his own. If he had fallen, he might have shattered into a thousand pieces. But he made it to the top all by himself. "I was horrified," Raquel says, "but also excited by his accomplishment." Isaac just smiled. It's the unmistakable emblem of his spirit, which is unbreakable.

Comments about Wish Book stories? Email [email protected] or call coordinator Leigh Poitinger at 408-920-5972. "Like" our page at Facebook.com/mercurynews.wishbook.

HOW TO HELP

Donations of $50 or more can help Isaac Ruiz' family buy him a $4,500 lightweight manual wheelchair, a $4,000 standing frame and a $2,500 electric vehicle lift. Donate to Wish Book at www.mercurynews.info/wishbook or clip the coupon.

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