Allanburg resident Sarah Prebianca has been trying for months to get someone to fix the gaps in the railroad crossings in her neighbourhood.
The problem is an urgent one as Prebianca and her family live right between two crossings, leaving her three-year-old wheelchair-bound daughter Georgia stuck at home with nowhere to go.
“She can’t safely go over the train tracks in her wheelchair,” explains Prebianca, in an interview with ThoroldToday. “We’ve been trying to take her out for walks but we can only go for about 400 metres and then we have to come back. We’re totally locked in.”
The daily stroll is an important part of Georgia’s day as it is one of the few activities that bring her comfort and joy.
The three-year-old suffers from a very rare congenital disorder called Lesch-Nyhan Syndrome, that affects a child's brain and behaviour. The syndrome usually only affects boys, but Georgia is one of a handful of girls in the world diagnosed with the disorder.
A key symptom of Lesch-Nyhan is engaging in uncontrollable self-injury, including lip and finger biting or head banging.
“Their bodies are completely out to get them,” Prebianca explains. “They will harm themselves and they will harm their care givers. They don’t mean to. It’s very awful. She’s completely immobile, dependant on all care and has a feeding tube.”
It takes a rotating staff of six to eight nurses and five PSWs to make sure Georgia is able to get through the day comfortably.
Because of Georgia’s condition, Prebianca simply can’t hop in the car and drive her elsewhere for exercise.
“We typically have two people with Georgia at all times,” she says. “One person can’t just drive her because Georgia will try to hurt herself. One person has to watch her arms the whole drive. It’s a lot of different uncommon barriers that we have.”
The railroad crossing issue has severely disrupted Georgia’s daily routine.
“We used to take her to the canal trails,” says Prebianca. “She loves seeing the water and the birds. There’s so little we can do for her because of her condition and it’s so sad that we don’t even have that as an option.”
According to Prebianca, the trouble all started last year when CN Rail did some work on the railroad crossing at Henderson Street — leaving big gaps between the wooden beams that fill the crossing — in which Georgia’s wheelchair gets stuck.
“One person can’t get Georgia across,” Prebianca explains. “She has giant wheels at the back but there’s this safety so you can’t tilt her back and roll her on the big wheels because the wheelchair is too safe to let it happen.”
Pictured: Georgia trying to cross the railroad tracks.
Prebianca has been in touch with the city about the issue, but they’ve been occupied with another issue flagged by Prebianca: A possible train whistle cessation.
“We have train tracks right there and I’m asking for them to not whistle at night,” Prebianca says. “They use these tracks to turn the trains around so when the trains go one way they have to beep, and then five minutes later they’re beeping again. Georgia has a sleep disorder so she’s up multiple times a night and we need less reasons for this child to have to wake up.”
City Hall has taken the opportunity to do a study of possible whistle cessations at all railroad crossings in Allanburg.
According to a draft version of a report on the study, it could cost a total of $1,308,000 to upgrade all railroad crossings in Allanburg — with $350,000 going towards fixing the railroad crossing at Henderson Street.
Prebianca says she has been told by City Hall staff that, if City Council approves the project, construction would not be completed until next year at the earliest.
While the train whistle cessation is important to Prebianca, she would like to see the railroad crossing temporarily fixed so she can at least take Georgia for walks again.
ThoroldToday reached out to CN Rail for comment but they say that they will not fix the issue unless it is paid and asked for by the city.
“The crossing has been maintained according to regulatory requirements,” they write. “Crossings are a joint responsibility between the local road authority and the railroad that owns the track. Should the local road authority request an improved material approaching and between the rails, CN would perform the work at the municipalities cost.”
Meanwhile, City Hall tells ThoroldToday that “The City will be working with CN Rail to address this issue and have it repaired as soon as possible. A report will be going to Council for the August Council meeting.”
Without an immediate solution in sight, all Prebianca can do is take Georgia up and down the street.
“You don’t understand the need for accessibility until you’re directly impacted by it,” she says. “Everyone should be able to enjoy the outdoors, get that vitamin D and just have those moments as a family. We deserve that. I would like them to move their butts.”