Isaiah Evans is a seven-year-old boy who attends Legacy Park Elementary School. He's become quite popular since he started in September of 2022, because there's no one else quite like him.
Born with several dislocations leading to numerous surgeries, Isaiah requires a trach to breath, which means never being alone due to suctioning being required to clear his throat. In addition, he is fed through a tube and breathes using an oxygen machine. He will also never be able to walk.
Yet he's the friendliest little cowboy at LPES.
According to Jan Cibart, R.N., who has been his private nurse for most of his life, the Evans family is giving Isaiah the fullest life possible.
Last week we shared a story about a fundraiser to help Ken and Janelle Evans purchase a custom-made medical van, which will make traveling with Isaiah much easier for everyone. Read more HERE.
Cibart, who is from Regina but was still able to spend an average of three days a week for five years with the family in their home, said there's nothing about his physical body that is typical or “normal”.
“Everything about him is different. His elbows don't stretch, don't extend. His forearms are very short, his fingers are very flat and long. Some of them are contracted, some of them are straight. His left arm is very weak. His right arm is his dominant arm, but he can throw a ball with perfect aim because he can pull his right shoulder right back, upside down, and use his core strength. He's got an incredible core strength that he uses to balance and he's developed that himself,” she shared.
“But his knees, his hips, his feet, he'll never be able to wear shoes. They're very differently-formed,” she explained.
In addition to having multiple surgeries on his leg, hip, feet, and joints throughout his life, Isaiah was the first ever in Canada, and the youngest on record, to have had a spinal fusion surgery in Saskatoon, “where he had a very big fusion of his spine from up in his neck, [to] halfway down his back, to provide some stability to his spine because, just like all his other bones and joints, his spine was very, very, very wobbly, and he still will have a further surgery in the lower part of his back at some point.”
“That was just to sort of get [his legs and hips] held in place, and some of them worked and some of them didn't.”
She noted that travel is often required for these surgeries, and while prior to the opening of the Jim Pattison Children's Hospital in Saskatoon in 2019, they were going all the way to Edmonton.
“There's a whole team that he's under their care,” she said. “He's got a cranial facial specialist, and also has an orthopedic specialist, a respiratory specialist, a neurological specialist, all in the Children's Hospital.”
Cibart said she has been working with Isaiah since he was 18 months old, but he is now at an age when can he attend school, under the charge of Educational Assistant Shannon Seitz, who Cibart helped to train for the first month of the school year, along with other staff at the school.
“He is very bright and is able to communicate through sign language and through his use of voice, which is different than ours,” she shared. “He speaks lots with the intonation of words and not the actual forming of words, but it's getting stronger as he grows older. He's very bright.”
“As he has gotten older, he recognizes his own medical needs. He's smart, he can tell when his oxygen is low. He can tell when he needs to go on the humidified oxygen machine.”
“He does extremely well, and his redeeming feature is his sense of humour, and that he is so bright and happy. He just is the happiest human being I know, and loves to joke. He's the biggest joker,” said Ceibart.
Isaiah is in Grade One now, but he completed his Kindergarten studies online.
“He's just so social and he never had the chance to socialize with kids the way other kids do, except for his cousins, and so he is thriving in school and Shannon is a huge part of that,” she commented. “Most people would have panicked [in the job]. Nurses panic with a child as fragile as Isaiah. That's why I came from Regina.”
“Because he's very medically fragile, you just never know, you can head out into the field with a kite for the day, but you've got to take an entire wagon full of equipment with you,” she noted.
His feeding tube machine goes with him to school, as does the suction machine, a bag of emergency airway supplies, his suction machine, and his oxygen tank .
“So that particular vehicle is the one that has the ability for somebody to go from the front seat, you know, pull over on the side of the road, go from the front seat quickly into the back and to suction him when he needs to be suctioned.”
“This particular van is the only one that's designed to manage him, because of his breathing issues. He can never be alone, because he can't suction himself. So when he needs to be suctioned, which is the ability to clear his throat, how we clear our throats, his has to be done with a suction machine, a cathlon that goes in his trach. When he needs that, you have to be able to stop the vehicle on the side of the road or stop wherever you are doing and be able to do that.”
Currently, for travel Isaiah has to be lying down, unable to look out the window, or in an uncomfortable car seat. He now weighs 65 pounds and isn't as easy to maneuver as he once was.
For this reason, the family is currently modifying a modular home on their farm, rather than attempting to do so to their 100-year-old farmhouse, which will make life much easier for them having an accessible bathroom and a ramp. He has a wheelchair now, but it's Isaiah's dream to eventually be able to get an electric wheelchair for more freedom to explore.
The Evans family is also on alert at night, due to any issues coming up with Isaiah's breathing, which is monitored by machines.
“I don't think they know a full night sleep and haven't since Isaiah came home with them,” she noted.
A nurse for 41 years, including pediatric nursing, Cibart said she has never in her life met anybody who changes lives like Isaiah does.
“He's just the funniest, happiest kid. And most kids with his amount of physical disability would also have a lot of cognitive stuff, but he doesn't. He's just a little wizard in that head, but has always struggled to get his jokes out, because communication has been a problem because of his trach and the shape of his mouth inside.”
She said Isaiah is good with sign language, however, and his communication has been improving thanks to being in school.
“He's got an amazing teacher at school. It's just been phenomenal. He's pretty popular in that school just because he's so social.”
Cibart said Isaiah's spirit is a strong testament to his family's values.
“His parents' faith is so strong and their ties to family is so strong that I have never seen them at a weak point, and I have spent many, many days just in their house in the middle of their day-to-day life for six years,” she shared.
“This is what makes him who he is. They have the ability to just go with the flow. They've never protected him from the hay in the barn. They've just always allowed Isaiah to live life to the fullest, and he has. His favourite thing is to be out in the fields, to be out in the barn, to be out in the corrals with the animals and with his grandpa and his parents as they're farming. They run a busy livestock farm of lambing and calving, and he's just always been a part of it.”
She said they just let him be Isaiah, “not focusing on what he can't do, but they have always focused on what he can do. And that's a true gift.”
Cibart noted that the Evans family asks for nothing, expects nothing, and have always just taken his medical issues in stride.
“They just go through life with what they're given and it's amazing. That is certainly what's allowed him to be him, because he is a farmer through and through, that little kid.”
She said that most parents, herself included, with a child as medically fragile as Isaiah, would protect them from dust from cat hair, from everything with that he is vulnerable to. “But he's never been protected. He's just such a solid little person, both physically and mentally, as a result of it.”
“He's really something else,” she continued. “And he's very aware of his differences, but he just never gets frustrated when somebody can't figure out what he wants or what he's saying, and I think that just comes from his parents: easygoing, just 'it is what it is'. So you just go with it.”
She said the whole family, including Isaiah's older brother Liam and his younger sister Grace, have always been giving and helpful, and “there's no stress.”
Cibart said his EA Shannon Seitz is amazing for also being one of those who can just go with it.
“I mean, she had to learn everything about him. How to change his oxygen tanks over, and how to not forget to turn the oxygen on, because if you forget, he'll fall asleep and slip into a coma because he's not getting enough oxygen,” she said.
Seitz and Cibart are the organizers of the GoFundMe and the direct-donation option that has been set up through the Weyburn Credit Union. Find the details HERE.
The photos below show just how much Isaiah enjoys his life: