When Sandy was 26 weeks pregnant, she learned that her daughter, Cassidy, was a lot smaller than is typical at that stage of development. After an anatomy scan revealed that Cassidy had broken her femur in utero, she was diagnosed with a rare genetic condition called osteogenesis imperfecta (OI), also known as brittle bone disease. This meant that Cassidy’s bones were so fragile that even the gentlest movements posed a risk of fracture.
After Cassidy was born, she spent 63 days in the NICU in her hometown of San Diego, where her fragility made routine care daunting. Nurses were hesitant to change her diaper, fearing their touch would cause her bones to break. Once home, Cassidy’s fractures continued, each a painful reminder of the challenges they faced ahead.
When hope arrived
Cassidy’s path took a hopeful turn when her family found Dr. Maegen Wallace in Nebraska.
“The moment Dr. Wallace walked in, she just gave us hope,” expressed Sandy.
Widely regarded as a leading expert in OI, Dr. Wallace performed Cassidy’s first surgery at 18 months, using rods to stabilize her leg bones. Before the procedure, Cassidy couldn’t sit up. With these rods, she experienced far fewer fractures and recovered more quickly.
Cassidy’s family was flying regularly from San Diego to Nebraska to see Dr. Wallace, and when they were told that she was planning to move to Phoenix Children’s, they didn’t hesitate to follow. “She promised us that if we followed her, she would give us 100% of herself. We would go anywhere that Dr. Wallace wants to move. If she moves out of the country, we might have to follow her there too,” said Sandy.
Later, Dr. Wallace performed surgery where rods were used to stabilize Cassidy's arms, putting her on a path to a future where she could become more independent. Through it all, Cassidy remained bright, happy and filled with strength.
More than a hospital
“Phoenix Children's is my heart outside of my body because that's what it means to my daughter,” says Sandy. “Without Phoenix Children's and Dr. Wallace, I can't imagine what Cassidy's care would look like. Phoenix Children's is the reason Cassidy is able to do all the things she can do today. They are the reason she can wheel herself in a wheelchair, hold a pencil and pick up a book.”
Cassidy continues to receive care at Phoenix Children’s, flying regularly for routine visits, where Dr. Wallace and her team have built a remarkable support network for families navigating OI. For Cassidy and her family, the compassionate care they received from Dr. Wallace and Child Life, a donor-supported program, has empowered Cassidy to live fully. Her family now looks forward to ensuring Cassidy thrives as a confident, independent wheelchair user.
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