Jeryn recalls the “pins and needles” she felt during those first breathless moments as she waited for her newly born baby to cry. It was a terrifying time for Jeryn and Jon – ultrasounds had shown their first child was tiny compared to other babies at his stage. Then the artery in his umbilical cord clotted off. With his life hanging in the balance, care providers rushed mom into delivery at South Health Campus at 36 weeks. “I was terrified,” she recalls. “I didn’t care what they did to me, I just wanted my baby to come out.”
Jaxson was born one month early, weighing just shy of five pounds. It was during his first year that Jeryn and Jon noticed he wasn’t hitting his milestones. There were many tests but no clear answers. At 2 years old an MRI at the Alberta Children’s Hospital revealed that Jaxson’s cerebellum had atrophied. Further tests would reveal Jaxson was suffering from ataxia, the result of damage to the part of the brain that controls muscle coordination. He also suffers from low muscle tone, global developmental delay and sleep apnea.
It’s a complex condition, and a multidisciplinary team of experts from across the Alberta Children’s Hospital have been working to pinpoint a diagnosis. Specialists are probing his genetics. In the meantime, little Jaxson is hard at work becoming more and more independent. He and mom have taken water therapy classes, and he is seen by physiotherapists and occupational therapists to help him grow more mobile. He recently transitioned from a walker to a wheelchair, and mom says it was a dramatic improvement for Jaxson. “He’s a whole different kid,” says Jeryn. “It’s given him so much freedom and confidence – it makes my heart melt to see him so happy.”
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Mom says the Alberta Children’s Hospital has become a second home to her family – and they know they’re in the best hands.
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