Born with many medical complexities, little Ruby had a rough start in this world. Her life was saved multiple times at the Alberta Children’s Hospital through major surgeries and the quick work of the intensive care staff when she coded. Ruby was later diagnosed with a rare condition called Goldenhar syndrome, which is often associated with severe skeletal and spinal irregularities. Her curved spine was pressing on her vital organs.
Last spring, Ruby underwent halo traction to help straighten her spine in advance of surgery. Ruby had a metal device known as a halo drilled into her skull. This halo would attach to weights through a pulley system. For three months, she and her mom Stacey (and sometimes dad, Mike) lived at the Alberta Children’s Hospital. Each day, Ruby would roll through the halls in her walker as the halo traction slowly adjusted the curve in her spine in order to give her surgeons a bit of a head start.
Following the traction, Ruby underwent a major operation by orthopedic surgeon, Dr. Fabio Ferri-de-Barros, to insert adjustable metal rods called MAGEC rods along her spine to help keep it straight. MAGEC rods have transformed treatment for many kids like Ruby. As a child grows, the rods need to be adjusted to accommodate for the change in height. Previously, a surgeon would have to perform major spine surgery every time a patient needed a rod lengthening. Of course, each surgery and general anesthetic comes with a variety of risks, including infection, and resulted in hospitalization and time away from school, family and activities. MAGEC rods can be lengthened non-invasively using a magnet outside the body. It is quick, painless and kids and be back to school in hours. Best of all, it doesn’t require anesthetic and children face many fewer risks.
The MAGEC rods will hopefully spare Ruby from having many surgeries down the road. These days, she’s doing things her parents never knew she’d be able to. She rides the school bus to preschool and she is so thrilled to run and play with her brother, Theo. The DeBoers have been amazing ambassadors and fundraisers for the Alberta Children’s Hospital Foundation over the last couple of years. They’ve donated more than $6,000 from the sale of XO Ruby bracelets alone.
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