Rankin Inlet boy getting surgery to relearn how to walk and follow his dreams

Five-year-old Sebastian Webb wants nothing more in the world than to be a firefighter. There is no other option in his mind.

“He’s an action-adventure kind of guy,” Sebastian’s father, Luke Webb, said of his son in a phone call.

Luke Webb is a volunteer firefighter himself and also works night shifts as a paramedic in Rankin Inlet. He became a firefighter because of his son’s dream, so that Sebastian could come to the fire hall and look at the machinery that he hopes to be able to operate some day.

“He likes the idea of saving people,” Luke Webb said.

On June 12, with the help of his community, Sebastian will come one step closer to his dream.

He will travel to the Montreal Children’s Hospital to undergo an eight-hour surgery on his spine that will help him battle his cerebral palsy.

The condition forces Sebastian’s muscles, especially in his legs, to be extremely tight at all times, making it hard to walk. Roughly two out of every 1,000 children in Canada are affected it, according to 2020 research by the Public Health Agency of Canada.

Sebastian Webb lives with a condition called cerebral palsy that makes his leg muscles tight at all times, causing difficulties walking. (Photo courtesy of Luke Webb)

Sebastian was diagnosed with cerebral palsy shortly after birth, his mother Jennifer said. He was born prematurely at 27 weeks and went through two surgeries to correct a severe brain bleed, which led to the onset of the condition.

As part of the surgery Sebastian will go through, doctors will remove the nerves that are causing the tightness. After six weeks of rehabilitation in Montreal, followed by six months of intensive physiotherapy in Winnipeg, he should fully regain his ability to walk.

Sebastian knows about the surgery, and with all the things he has been through he’s not scared of doctors, Jennifer said.

But he doesn’t fully grasp the scope and the aftermath of it, she added.

“There are people that have done [the surgery] and play professional sports afterwards,” she said.

The family’s hope is that the surgery will allow Sebastian to do things all five-year-olds love doing. Riding a bike, for example.

“Seb dreams of riding a bike,” Luke said.

“He can’t without help, as his legs are not strong enough to push the pedals. This surgery will make that possible for him as well.”

But the long rehabilitation process that will let Sebastian relearn how to walk without support comes with challenges for both him and his family.

As there is no proper rehabilitation programming in Nunavut, the family will be forced to travel back and forth between Rankin Inlet, Montreal and Winnipeg. Also, they have a three-year-old daughter, Lucy, who somebody has to help take care of and, importantly, the family has no savings to tap into to fund the entire process, Luke said.

“We’ve been paying off my student loans so we don’t have big savings right now,” said Jennifer, who is a high school teacher.

Sebastian Webb, on the left, with his sister Lucy Webb and father Luke Webb, fixes a bike. Sebastian loves tools and always dreamed of riding a bike without anyone’s help. (Photo courtesy of Luke Webb)

So the family, with the help of their friends, started a GoFundMe drive on April 22, where they have raised $4,200. On Wednesday, they restarted the fundraiser and are planning to hold a penny sale at the Laura Gauthier Memorial Volleyball Tournament.

“The outpouring of love from the community was overwhelming. I was over and over getting brought to tears,” Jennifer said.

They haven’t set a goal for the amount of money they hope to raise, because they don’t know how much all the costs will add up to.

“We don’t have much to draw on other than this,” Luke said of the fundraisers.

“It’s crucial for us to have this.”