Story published at magicvalley.com on Monday, March 24, 2008 Last modified on Monday, March 24, 2008 12:13 AM MDT
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Mother adapts to daughter's rare brittle bone disease
By Amy Ballard Times-News correspondent
FAIRFIELD - Danielle Goodell knows how it feels to sit in the emergency room with a child who's broken a bone.
She knows better than most.
Her daughter, Hailee Humeniuk, 22 months, has had between 20 and 25 fractures because of osteogenesis imperfecta, commonly called brittle bone disease.
"When I was pregnant, I didn't ask for anything but a healthy baby," said Goodell, who is a single mother. "I did get a healthy baby, I just got a different kind of a healthy baby. It could be so much worse."
Goodell is a 2005 graduate of Camas County High School now living in Arizona with plans to move back to Idaho. She and her brother brought Hailee here this week to visit the child's great-grandparents.
Typical of those with her disease, Hailee is small for her age. Her teeth are pearlescent. She's highly sensitive to heat and cold. Hailee's most noticeable deformity is her severely bowed legs. But that doesn't keep her from walking and playing like her friends.
Hailee's geneticist told Goodell, now 21, that treating Hailee like a porcelain doll would only spoil her, and that Hailee's muscles wouldn't get strong enough to support her bone structure.
Occasionally, breaks do happen, sometimes for no apparent reason. "You can't help but feel you did something wrong, even though you didn't," Goodell said. "You want to protect her, but you can't bubble wrap her."
She has the routine down: put Hailee in the car, drive to the hospital, get the splint, see the doctor. And, when possible, don't cry.
A nurse once told Goodell, "I don't know how you do this," she recalled. "It breaks my heart seeing her like this. I can't imagine how you must feel. You're probably one of the strongest people I've ever met."
Hailee receives medication to reduced her breaks from about two bones a month to two a year.
Goodell considers her daughter a miracle baby. "She wouldn't be alive if I hadn't had a C-section," she said. Even without undergoing natural birth, Hailee was born with two skull fractures. Two days later a radiologist pre-diagnosed her condition.
Although OI is hereditary, no one in Goodell's family or Hailee's father's tested positive.
Goodell hopes to move back to Fairfield where she spent much of her childhood and where her grandparents, Derral and Arlee Hupfer, live. In the meantime, mother and daughter have a supportive home with Goodell's father in Arizona. "My dad is a big help," she said.
A self-described jock, Goodell had to alter her vision of teaching her child to play sports when she learned Hailee had OI. "It's hard to adjust your dreams and aspirations for your kid like that," she said.
There are sports the athletically inclined toddler will be able to play, though. "She can't be a volleyball player like I was or play soccer," she said. "But she can be on a swimming team."
Some children with OI get stronger at puberty. "Time will tell," Goodell said. "You just have to let it take its course."
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