London, Ont. mother seeks funding to buy wheelchair accessible van for teen son suffering from rare disorder

Mason Christiaens was born blind, but the 14 year old has never allowed his vision to get in the way of enjoying life.

His mother Ashlee Smith said that up until May of last year, he was a typical kid who loved adventure.

“He was completely normal, he has no vision perception but that didn’t stop him, like he’s been skydiving, he’s been skiing, he’s done more than anyone I know,” said Smith.

On May 7, 2023, Mason woke up with his lower extremities paralyzed.

“He’s like, ‘I can’t move my legs, and it’s hard to swallow,’ so I thought like, ‘Okay we’ve got to get to the ER,’” recalled Smith.

When they arrived at the hospital, Mason was quickly intubated and taken into the intensive care unit. He received a number of spinal taps, CAT scans, x-rays, ultrasounds and MRIs.

Mason Christiaens of London, Ont. is seen in this undated image. (Submitted)

“They [doctors] were able to determine that he had Guillain-Barré syndrome (GBS), so essentially when your body attacks itself, and attacks the nerves,” explained Smith.

Doctors have determined Mason suffered from brainstem encephalitis, and has dead cells in his cerebellum. He has lost his mobility, and ability to speak.

For the last eight months, Smith said they have been travelling to Toronto for specialized physical therapy at Holland Bloorview.

“They have all his therapies in one spot, so physical therapy, his occupational therapy, speech and language, communication, they’ve got pools so everything you need, in one building,” explained Smith.

The family has been staying at Holland Bloorview, but they will be discharged in June, and once they return to their home in London they will need to have a form of transportation to be able to travel to all of Mason’s necessary appointments.

Mason Christiaens of London, Ont. is seen in this undated image. (Submitted)

Due to Mason’s physical needs, Smith said every trip they’ve made to Toronto with Mason so far has cost the family up to $600 roundtrip.

“Travelling in a wheelchair is new to us obviously, and a lot more difficult than I thought, we’ve never been exposed to it before and learning about how tricky and how expensive it is,” said Smith.

Locally, Mason travels to and from his appointments using the London Transit Commission’s (LTC) specialized transit service.

“You call three days in advance, and you book, but the need is a lot greater than what they have available, so you call to book and they’re booked up already,” explained Smith.

LTC's General Manager Kelly Paleczny agrees with Ashlee's statement, and told CTV News London, “The demand on the specialized service outweighs its availability. A growth business case has been submitted to the city for consideration as part of their budget process”.

Mason Christiaens of London, Ont. is seen in this undated image. (Submitted)

The family has inquired about purchasing a wheelchair accessible van, or converting a pre-owned newer van to accommodate Mason’s needs, but both options are very expensive — a cost that is out of the budget for Mason’s family.

A fundraiser has been launched to help Mason’s family raise money to purchase a wheelchair accessible mode of transportation.

“It would make life a lot easier if we had our own mode of transportation, instead of having to rely on other companies and if they have availability, or if we can afford them,” said Smith.

Outside of travelling to appointments, Smith said the transportation would help Mason visit family, and do fun activities.

It is unclear if Mason will ever recover fully, but the family is hopeful that one day, Mason will be able to walk again.

Smith said if people cannot financially donate they can still be of significant help to Mason and other children leaving with GBS by donating blood and plasma.