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Cornelius News

When faced with unique challenges, this mom plans to ‘ROAR LIKE A LION’

Avery was born with Brittle Bone Disease, or Osteogenesis Imperfecta

By Dave Yochum. For Janelle and Joseph Masters, raising four active kids in Cornelius is a full-time job. While Joseph works in marketing, Janelle stays at home mom during the week with Ethan, who is 6, Liam, 4, Kaitlyn, 2, and Avery Grace, 1.


Janelle and Joseph Masters

Thing is, Avery has Brittle Bone Disease, or Osteogenesis Imperfecta. It is a genetic condition that causes bones to break more easily. The condition can vary, of course, but it’s a lifetime thing, with fragile bones being one of the most common symptoms. Others include hearing loss, fatigue, brittle teeth and respiratory problems.

Avery was born New Year’s Eve a year ago with a complete femur fracture and fractured ribs. To put this in perspective, the strongest bone in the body—the femur—was completely broken and was overlapping itself.
“Avery has been the perfect fourth baby! She is a content, happy and easy going when she’s comfortable and not in pain. She is playful and smiley with people she is familiar with. She has a gorgeous, infectious smile and smiles with her whole face. Avery draws people to her wherever she goes,” Janelle says.

DSC_0239 (635x800)The little girl was the star of the show at a fundraiser for the Masters organized by Cornelius-based Little Smiles of North Carolina. In April, the entire Masters family is heading to the Children’s Hospital and Medical Center in Omaha, Neb., one of the top Osteogenesis Imperfecta research centers.

The Masters will meet with multiple medical disciplines to determine best care practices for her, including rodding surgeries for her lower extremities.

“This is our opportunity for an annual comprehensive check for Avery. In the future we are planning on having rodding surgeries performed at this facility by surgeons that do this on a regular basis as most pediatric orthopedic surgeons perform this surgery very infrequently,” says Janelle, a physical therapist.
The past year has been one of growth for Avery, Janelle and the whole family.
“Of course I get down at times. Not nearly as much as I did in the first six months or so that Avery was in our lives. I was very, very sad especially those first few months although I didn’t want to let it show. I needed to be strong for her and my husband and for the other kids,” Janelle says.

Having brittle bones is not a death sentence.

20150125_194423“Everyone has their obstacle to overcome, whether it’s internal or external. By the grace of God she will overcome her obstacles and be able to live a full and abundant life,” Janelle says.

Nevertheless, when Avery was born her condition was described as being severe. She’s been in and out of the hospital, not to mention Intensive Care.

She receives infusions every eight weeks of a medication called Pamidronate, which helps strengthen bones by allowing additional bone to build. But the new bone is still poor quality and breaks more easily than normal bone.
“But it definitely helps,” Janelle says. “Avery was fracturing every week in the hospital until her first dose of PAM was administered and she went two weeks prior to another fracture. In total, she has had nine fractures but has not one since May.”

Avery was born nine weeks early, weighing 2 lbs., 11 oz. She spent almost three months in Neonatal Intensive Care.

And there were three kids at home, plus a husband and bills to pay.

“I know that the challenges I face as a mom will change as Avery gets older. Right now, the challenge is keeping her safe in a household of three other children, one of whom has no good understanding that her sister is fragile. Having a medical background I feel that it is also my responsibility to ensure that she is getting optimal medical care and to provide her proper care if and when she does fracture,” Janelle says.
There have been close calls.

42B“Whether it’s the kids stepping over her, her laying on the floor and the boys take off running through the house, something falling off a table and onto her. … My biggest fear is a skull fracture. The one close call that stands out the most in my memory is when Kaitlyn stepped off a stool and onto Avery’s lower leg. I am not sure how we escaped a fracture,” Janelle says.

Avery’s future will be challenging. She will need a wheelchair and dental implants. The Masters hope to buy a one-level ranch so Avery can go to every room.

“We look ahead and worry about her ability to socialize well as the fact that she will look different than her peers. … I am going to have to be her voice when she’s in school—to advocate for needs she may have—I will have to be the shoulder for her to cry on when the other kids are mean to her. I am going to be the one to roar like a mama lion.”