Unbreakable: Despite brittle bones, 4-year-old leads full life

Published: Saturday, May 28 2011 11:00 p.m. MDT

Malformed bone is a given with the disease. Surgeons tried to mitigate femur curvature by putting a rod in his leg, but one of his bones crumbled and they changed their minds. He broke a leg once while just sitting in his rear-facing car seat. Ribs, jaw, every long bone in his body — all broken. He can break without really doing anything. Only his pelvis and head, and the little bones like the ones in his fingers and toes, have not been injured — as far as they know.

"We stopped counting a long time ago," Rachel said. "And I know we've missed some."

That it happens so often does not mean it happens pain-free. "He has high tolerance because he's dealt with it so long," she says. "But it really hurts. After a break, it takes two to three days to get back to being goofy, playful Nathan."

But when he prays, he thanks his Heavenly Father for his body. "He's so grateful for it," Rachel said. And so are his parents.

While OI can be passed down from an affected parent, it can also result from a genetic mutation particular to that individual. That seems to be the case with Nathan, since no one else in his family has it. It's autosomal dominant, so his own children would have a 50 percent chance of inheriting it.

Nathan can't walk, but he moves fast lying down, often grabbing his feet to boost his locomotion. Sometimes he looks like he's swimming on his side. He has a funny, cheerful voice, not quite squeaky but not robust.

Rachel said that's an OI voice, as typical of the adults who have the condition as with the kids.

In preschool at Westbrook Elementary two days a week, he uses a power wheelchair. At home, he sometimes uses a standing wheelchair his dad modified for him. He straddles a little saddle, his feet touching the floor as he bears just slight body weight, which helps build bone density.

When she explains OI to others, Rachel describes snowflakes. Fragile. Unique. And quite lovely.

"I like to appreciate him for what he can do, rather than what he can't," Ryan said. "He has a giant personality. He's a thinker. And the things he comes up with and says."

Recently, Rachel was getting ready to cut his hair.

"Nathan, are you ready to get your hair cut?" his dad asked him.

"Not all of it," the boy said. "I don't want my brains to get cold. So I can think."

Nathan is very articulate at 4, though you have to listen carefully to that little voice. In a way, it fits him. Since so many breaks leave little opportunity for growth, he looks much younger than his age, but he hates being called a baby and he's not shy about saying so. He is a big boy in a genuinely tiny body.

At first, it took both Rachel and Ryan to change Nathan's diaper because they were fearful and tentative. It was six months before she tried to pull a shirt over his head; early on, she made sure everything snapped. But their determination to see that he has a full life with all the experiences that it offers soon made them fearless.

Recently, they watched — smiling and with fingers mentally crossed — as Nathan went down a slip-and-slide at a special camp for people of all ages who have OI and their families. At Camp Attitude, in Foster, Ore., Rachel gently placed him in an inflatable raft before sending him down the hill.

Ryan and Rachel have allowed him in a tethered hot air balloon, on a gentle horseback ride, even on jet skis at the Oregon camp, where every precaution that can be taken is by those familiar with OI. Still, there are no guarantees.

"He's going to break anyway. It might as well be doing something fun," his dad said.

Fragile is a word that's sometimes overused. There's no better word to describe Nathan Glad. Despite that, his parents have chosen to let him live a robust and experience-rich life, a decision that took significant courage.

"I jumped in when he was born," Rachel said. "I had to. There was no way I wasn't going to learn to hold my baby."

She's watchful, though, and careful about to whom she entrusts him.

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