Diagnosed with osteogenesis imperfecta as an infant, Maddox has faced fractures, surgeries and challenges with remarkable resilience, supported by her family and the specialized team at Shriners Hospitals for Children Canada.
A Surprising Diagnosis
When Maddox was born, her parents had no idea that she would soon be diagnosed with osteogenesis imperfecta (OI), a rare genetic condition that causes fragile bones and frequent fractures. There had been no indication throughout the pregnancy that anything was wrong. All the testing and ultrasounds appeared normal. But shortly after Maddox was born, doctors discovered that she had fractures in both of her femurs.
Her parents had never heard of OI, and they suddenly found themselves separated from their newborn daughter as doctors searched for answers. It was a nurse who was not even part of the delivery team who recognized Maddox's features and suggested that she might have OI.
This was a diagnosis that brought fear and uncertainty. “Getting a diagnosis for a disease you have never even heard of can be very scary,” said her father, Kyle. The family began researching the condition and searching for specialized care. Through the power of online support groups, they discovered Shriners Hospitals for Children Canada.
Finding Specialized Care at Shriners Hospitals for Children Canada
Born in Alberta and now living in Cape Breton, Nova Scotia, Maddox was just 6 months old when she and her family made their first trip to Montreal. There, she met Reggie Hamdy, M.D., FRCSC, and the multidisciplinary team that would become such an important part of her life. Maddox was diagnosed with OI type 4. During the first two years of her life, she experienced frequent femur fractures and her legs were severely bowed.
When she was 2, Maddox underwent surgery to have rods inserted into her legs. Over the years, she has had over 10 surgeries, including procedures to place rods in both forearms and, more recently, Fassier-Duval rods in both fibulas.
Learning to Navigate the World with OI
For most children, this would be an overwhelming journey. For Maddox, it has become part of learning how to navigate the world. She knows there are things she cannot always do in the same way as other children. But that has never stopped her from forging her own path to inclusion.
Maddox loves to dance, and her family once enrolled her in ballet. On her very first day, she became so excited during warmup that she jumped along with the other children, despite being told not to. She fractured a bone. It was a difficult experience, but it did not take away her love of being involved.
At school, Maddox became the manager and coach of her elementary school's basketball team. Sometimes, when the gym is not too busy, she is given a jersey and joins the other children on the court in her wheelchair. While Maddox primarily relies on a wheelchair for mobility, she is eager to become more independent and continues to practice using her walker whenever it is safe to do so.
Maddox has friends who look out for her and help her participate. And Maddox, in turn, continues to find ways to be part of the activities she loves. She wants to get out of her wheelchair and use her walker, although this can be challenging.
But she keeps trying.
As she grows, she is learning more about her body and how to adapt to the challenges that come with OI. Her resilience is not about never facing setbacks. It is about finding another way forward when she does.
