Jacob Totalik is 11 years old and he’s already endured 50 surgeries.
He was born with severe scoliosis, which caused a sideways curvature in his spine. Numerous back operations have corrected the condition enough that he can walk unaided, said his mom, Lori Totalik Kringorn.
Despite his health challenges, Jacob remains upbeat.
“I feel good,” he said.
When asked what gives him strength, he replied, “Probably my family together.”
His mom marvels at his resilience.
“He’s really happy. He surprises a lot of people with his condition and how he handles everything,” she said. “He’s a strong boy. He’s smart. He helps his classmates when they need help.”
Doctors didn’t know whether Jacob would live when he was born, Lori recalled. He wasn’t able to leave the hospital until he was almost seven months and he had his first of many operations at 18 months.
“(Then) they didn’t even know if he was going to be paralyzed with his first surgery. He proved to everybody that he’s a strong boy… he makes us strong too,” she said.
The many operations in Edmonton have improved his quality of life, she said. He used a wheelchair years ago but no longer needs it.
“Over the years, it’s been getting easier for him,” she said. “He can walk. He gets around, but he gets tired more easily than normal kids… he lets us know when he needs a rest.”
Lori’s mother, Theresa, who lives two doors down in Taloyoak, took care of Jacob during much of his early life as Lori watched over her other four children. Lori’s husband’s late mother also helped the family persevere, she added.
“Everybody helped us with him. There’s lots of support,” she said. “We’ve been through a lot. Everything was so hard over the years but we always find a way to manage.”
Theresa also admires Jacob’s courage, charm and intellect.
“I’m very proud of him. He didn’t grow much (physically), but his brain grew and he’s become a very smart young boy, and he’s so responsible,” she said. “He uses words that I didn’t even understand until someone explained to me what they mean.”
Theresa added that his peers are incredibly accepting of Jacob.
“We’re very thankful. When he started school the other kids were very careful with him and never made fun of him,” said Theresa. “They treat him so good.”
Jacob said he likes going to school and he’s particularly enamoured with math. He wants to become a pilot when he grows up, he added.
Jacob doesn’t have any further operations scheduled at this time, but that may change.
“We just wait and see how his appointments go,” Lori said.
Theresa repeatedly described his early surgeries as “very scary.”
“But the surgeons, they know what they’re doing. We trust them now after so many surgeries,” she said, although she noted that his neck remains crooked. “They can’t do nothing about the neck but the spine’s got rods in it so he’s straighter than we thought he would get.”
Having been extensively involved with the health care system, Lori said the experiences have generally been positive, even though the family is so far away from the medical expertise that Jacob has required.
“It’s really hard living up North with the health system,” she said. “But, yeah, the system’s been really good to us… they’re familiar with Jacob.”