My name is Camille Rose and I currently reside in Come by Chance, Newfoundland, Canada. Born with Osteogenesis Imperfecta (otherwise known as brittle bones disease), I am 39 years old and
was a patient of the Shriners Hospital in Montreal from the age of 12 to 21 years.
Running around and doing typical silly toddler things, I was diagnosed at the age of 2.5 years after a second femur fracture. Looking back, I had all the characteristics of O.I., blue sclera, bone
pain, and was a little shorter than my friends. Throughout my toddler years, I continued to fracture. This proceeded into Kindergarten and it was then my orthopedic surgeon at the Janeway Children’s Hospital in Newfoundland advised my parents that a wheelchair would give me more quality of life and protection from other rambunctious school-aged children.
Femur fracture after femur fracture, femoral rodding after femoral rodding, casting after casting, only for it to repeat – it was a way of life – I didn’t know any better. At the age of 11, I tipped my
wheelchair. The impact from this resulted in my right elbow shattering when it hit the pavement and several fractures in my left femur. Surgery repaired my femur; however, my elbow remained
severely restricted, regardless of it being pinned together.
February 1997 – wheelchair bound and learning to use my left hand (as my right arm was still severely restricted from the accident the year prior), my mom called the Shriners’ 1-800 number she had been given, explaining my condition, asking if I was a candidate. I was accepted for a consultation the following March.
We arrived at the hospital on Cedar Avenue on a cool winter’s day. It somehow reminded me of a little gingerbread house – I think it was the stucco, but in my mind, it looked like candy – I’m not sure why. Numerous tests were completed shortly after arrival, and when we met with the team later in the day to determine if there was any treatment available that could treat my condition, they asked, ‘Why is her arm across her chest?’. My mom explained that I had a bad fracture the year prior and never regained function as it was so severely broken. The team spoke in French amongst themselves (which we could not understand) and quickly advised us that I was a candidate for a new trial drug that was being used to treat Osteogenesis Imperfecta. This treatment has proven to work on some patients to increase bone density.
We left the hospital that day with an appointment and optimism that led us to believe that the function of my right arm would return. The following month, we returned to Montreal, where I had surgery to increase my arms mobility and have Pamidronate infusions for the next three days. We wouldn’t know if the treatment proved to provide positive results until the next visit.
Over the next four months prior to attending my follow-up appointment, my arm was getting stronger. I was able to brush my teeth with my right hand and write my name! Although very weak,
the surgery worked. We flew to Montreal for my follow-up appointment. The team asked how I was feeling after the treatment I had received four months prior. I had more energy, slept less, could
sit for longer periods, had less bone pain, and I was a little more independent. Upon viewing my bone scan, we were advised that I had a 60% increase in bone density. My bone density had jumped
from less than that of a newborn infant at the age of 12 years to mid-range for my age and size. I continued treatment until the age of 18, until my bone density was in the mid-normal range for my height and size, remaining a Shriners patient until I was 21.
Walking was a dream of mine since I was a little girl, and everyone around me knew it, but my muscle mass was never enough to support my body weight, as a side effect of the treatment was weight gain. At the age of 24, I moved to Saskatchewan, and I promised myself that if I was there for another year, I would never go through another winter in a wheelchair, so I started my physio regimen. For 6 months, I worked on my legs, exercises I created myself, and before I knew it I was standing. The following year, I decided to move home. My mother knew I was working on exercising my legs, but didn’t know I was walking. When the elevator opened at the airport, I walked out pushing my wheelchair. Mom couldn’t believe what she was seeing.
Fast forward to today – Shriner’s got me on a path that has forever changed my quality of life. Shriners has given me independence, freedom, and a lifestyle that I wouldn’t of otherwise experienced. Today, I am no longer wheelchair bound. I walk with the assistance of a cane. I have all but 5% function in my right arm. I can drive. I own my own home. I have a full-time job. All of which wouldn’t be possible without the Shriners’ organization, including all of you who volunteer hours of your time to make a difference in a child’s life, including my own, and for that I THANK YOU.