For months, Cindy and Dean suspected something was wrong with their daughter, Kayla. She was losing weight and she was so tired and lethargic all the time. Cindy knew for certain something was wrong when Kayla couldn’t even muster the energy to go trick-or-treating on Halloween. “What kid doesn’t want to go around collecting candy?” she says. Visits to their family doctor in Red Deer became frequent, but there were no concrete answers and no improvement. The turning point came when Kayla’s neck seized up and she was unable to move her head. She was crying up to 10 hours a day. A pediatrician referred her to the Alberta Children’s Hospital and as it turns out, just in the nick of time.
Pediatric rheumatologist Dr. Susa Benseler diagnosed Kayla with a form of childhood arthritis. The condition had become so severe that her inflamed spine was compressing her spinal cord. Dr. Benseler says had they not discovered it then, Kayla would have become a paraplegic and permanently confined to a wheelchair within days. It was terrifying news, says Cindy. The team needed to act quickly; there was absolutely no time to try various treatments and see which were successful. Thanks to research which has helped propel precision medicine, Dr. Benseler’s team was confident the right drug was Enbrel, which acts as a decoy receptor for a chemical that Kayla had excess of. The targeted therapy worked, and fast. Within days, Kayla had gained much of her mobility back and within a few weeks, her pain was under control.
The difference Cindy and Dean saw in their daughter was amazing. She went from being unable to brush her own teeth to riding a bike in a matter of weeks. When Kayla began riding a bike, Cindy sent an email to Dr. Benseler, who began crying she was so thrilled with the news.
These days, Kayla’s arthritis is considered “inactive.” She still sees Dr. Benseler and an occupational therapist at the hospital every few months to monitor her mobility, continued medication use and to reduce the risk of flare ups. The family is so grateful for the Alberta Children’s Hospital because without Dr. Benseler’s quick diagnosis and the personalized medicine she received, Kayla would have had little to no quality of life, says Cindy.
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