A Kitimat child has been granted a wish by Make-A-Wish Canada and is finally able to use it this fall after years of being too medically fragile, according to his parents and doctors.
Nine-year-old Levi Gardiner was born with no issues, but within 24 hours of being born, he had to be transported to BC Children’s Hospital in Vancouver due to complications.
“There was a lot going on, we didn’t really know what was happening with him,” Michelle Gardiner, Levi’s mom, said.
It was later discovered that Levi had a rare genetic mutation called SCN2A, which can cause autism, seizures, developmental disabilities, and muscle disorders, among other things. Because of these, Levi is wheelchair-bound and requires 24/7 one-on-one care.
“He just got more medically fragile as the years went on, with other challenges with his body, like body movement disorders, and he struggled with pain daily for years,” Gardiner said. “And he couldn’t sleep, and just a combination of disorders that came along with having this SCN2A mutation.”
Gardiner said Levi’s neurologist at the time of his diagnosis said that Levi was only the sixth person documented with the mutation. Today, however, as the cases grow, more and more is being learned about it.
Levi has had lots of surgeries in his life, Gardiner said, the biggest one being on his brain for his seizures in 2019. At that point, Gardiner said Levi had been seizing for about five months straight. They got worse, at first, after the surgery, but soon started getting better.
“It was a last resort, just trying to save his life,” Gardiner said. “He has seizures still, everyday, but they’re manageable.”
Levi’s wish came about prior to his brain surgery, but Gardiner said they didn’t feel he was stable enough to go through with it until now.
Gardiner said they thought and talked about what Levi would like as a wish, as meeting someone famous or travelling places are not of much importance to Levi. He is, however, a big fan of the outdoors, so they decided on a travel trailer, specifically a toy hauler, as it has the ramp in the back that would let Levi get in and out of the trailer in his wheelchair easily.
Gardiner said Levi’s very excited to use it to go camping with his parents and his 14-year-old sister, Dylan, and they’re excited, as well.
“We’re very thankful that he’ll be able to do that, and that he’s still here with us,” Gardiner said. “And he’ll get to enjoy some good quality time with us and to be outside, which is his favourite place to be.”
Emily Bressington, Levi’s Wish Coordinator at Make-A-Wish Canada, said she was excited for Levi to finally be able to use his wish.
“For them to be away from the doctor’s office and to be out in nature, making memories, will help build [Levi] back up in a positive way. And it will create happiness and give them something to look forward to, after they’ve been through so much,” Bressington said. “And it’s the perfect wish to grant right now, you know, the family can go on vacation while still practicing social distancing.”
Bressington said they got the trailer through Chemo RV in Quesnel, who were very helpful in assisting the Gardiner’s in finding, as well as providing the perfect trailer for Levi’s needs. And with the Gardiner’s heading out to use the trailer for the first time, Bressington said she was honoured to be a part of Levi’s wish.
“We felt so honoured to have had the opportunity to grant Levi’s wish and I’m just so excited for him and his family to go enjoy the great outdoors and make wonderful, lifelong memories together,” Bressington said.
“We get to do something that brings hope to a family and, you know, can change a child’s quality of life, and so I love that we’re able to be part of a change in that story and be something positive.”
Levi did have a time when he was seizure-free, following a trip to the children’s hospital several years ago. Gardiner said the doctor told them there was nothing else they could do for Levi and to bring him to hospice care, but Gardiner brought him home instead and started him on a medication they had tried previously.
“It was about four times throughout his life when we were given the choice whether to bring him to hospice care,” she said, but she brought him home every time, instead, so he could be surrounded by family and loved ones.
But miraculously, the medication worked and Levi had fewer seizures everyday. After one month on the medication, he was seizure free and didn’t have another seizure for one year and 10 months.
Gardiner said Levi learned to walk with support during that time and started progressing developmentally. He could go to school, he made friends, and it was just a really nice time for him and all of his family.
Then, all of a sudden, he woke up one day and and the seizures were just as bad as before. He started going downhill after that, until his brain surgery last year. But Gardiner said he’s doing much better now and keeps pushing back through everything that comes his way.
“He just keeps pulling through, and he’s such a fighter and he just surpasses all of those hard, hard seizures,” Gardiner said. “The fight within him is just crazy and he’s just meant to be here.”
Gardiner said Levi was given a second diagnoses about three years ago of another rare genetic mutation of the BRAF gene. BRAF gene mutations are the most common cause of ‘cardiofaciocutaneous’ syndrome, which affects many parts of the body, particularly the heart (cardio-), facial features (facio-), and the skin and hair (cutaneous).
At least 49 BRAF mutations have been identified in people with this disorder.
Gardiner said it was something that was hard to accept at first, but with everything he’s gone through, they’re just working to focus on Levi’s life and happiness, rather than his developmental progression.
“We’ve just really started trying to focus on Levi’s quality of life rather than developmental gains and whatnot,” Gardiner said. “And you know, I need reminders every now and then about that. You know, just to focus on his quality of life. And right now, I’d say he’s just very happy.”