By Don Urquhart, Times Chronicle
By any account, the journey that Leanne Scott, her husband Dale Fuhr and their extreme special needs son Callum are on together, is nothing less than extraordinary.
Some might already be familiar with Callum and his parents (who operate the Neurological Movement Clinic, MOVE Therapies in Osoyoos), but it is an evolving story that remains heartrending through all its many twists and turns.
Callum was born with a genetic condition called Pura Syndrome, an extremely rare disease affecting fewer than 500 children in the entire world.
Leanne describes Callum, or Callie as he’s affectionately known, as a “very complex” child. “He’s very happy, he’s very affectionate – they call him the sunshine boy – he is the most affectionate, most loving, adorable, funny little guy in the world!”
“We’re 100 per cent invested in Callum and this is our passion”, Dale adds. Indeed, upon learning that Callum would likely need lifetime care and therapy, the two quit their respective careers and returned to school a decade ago, becoming full-time Anat Baniel NeuroMovement Practitioners.
Now 12 years old, Callum is wheelchair-bound, non-verbal, not toilet trained and needs 24/7 direct care. At 34 kg Leanne and Dale are now beginning to struggle with lifting, moving him from room to room, bathing, toileting etc. – all things most families take for granted as they raise their children.
Add to this a whole slew of other facets of Pura including extreme low muscle tone which when combined with extremely high joint flexibility makes movement very difficult, severe delay in cognitive function, a rare form of epilepsy known as Lennox Gastaut Syndrome which doesn’t respond to pharmaceutical drugs and lasts a lifetime, scoliosis and autism/sensory processing disorder.
With bureaucracy and limited funding from the government creating ongoing obstacles, the pandemic exacerbated the situation by halting fundraising efforts by charity groups and service organizations for nearly two years leaving their coffers empty.
The realization by Callum’s parents that despite being therapeutic practitioners, they will very soon no longer be able to move and carry Callum and more specialized equipment like lifts, reconfiguring their home and proper transportation will all be necessary sooner than later. Unfortunately, special needs equipment is exorbitantly expensive Leanne says.
They then cottoned on to the idea of starting a GoFundMe campaign titled “Keep Callum at Home, Sweet Home” to help raise the money needed for his daily constant care.
The figure is not trivial – $300,000. After receiving queries about why they were asking so much, Leanne and Dale broke down the figures and focused on what they see as an urgent priority: transportation.
Treatment in Penticton, Kelowna and Vancouver – they’re regulars at B.C. Children’s Hospital – means they are frequently on the road. The problem is as Leanne points out, “when you travel with a special needs person, five hours over a mountain pass, you have to change a diaper at some point.”
“Up until now we’ve been able to find a little park or tuckaway into a corner somewhere, however, there’s zero privacy and zero dignity and he’s getting older,” Leanne says.
“About a month ago he needed a change and we were driving through Peachland. I don’t know Peachland very well so we saw a patch of grass and it legitimately was on the side of the road. Cars are going by, it’s noisy and he’s very sensory.
“I had an umbrella and I was trying to hide him to the best of my ability and the umbrella blew away at one point and a stranger was running and getting it and people were going by and it’s…”, the conversation pauses, Leanne’s emotions well up in a torrent defeating her efforts to continue the story.
“It’s not just inappropriate, not good and he needs to be covered and little children can come by and they don’t understand why there’s a 12-year-old boy naked in front of them – it scared a little girl,” she struggles to say, the words tumbling out saturated with emotion as she struggles to gain composure.
“It creates an awkward situation for everybody,” Dale adds, stepping in to provide an emotional reprieve for Leanne.
The only practical solution to this transportation problem is a van that is outfitted with a lift and an adult change table. Seems simple enough but not only is it seriously expensive at upwards of $200,000 it’s just plain difficult to put together such a configuration.
Leanne has been working with a company in the lower mainland where the owner has spent nearly 15 hours of telephone time with her discussing possibilities. “And that 15 hours is literally only the beginning, only phase one,” she says, expressing her utmost gratitude for his kindness.
And kindness comes from many sources. Out of the blue, less than a month ago, Leanne received a call from a local woman who runs a foundation. An email or two, a couple of phone calls and there was a commitment to purchase a state-of-the-art lift for their home. All told it will amount to a nearly USD15,000 donation.
Meanwhile, the GoFundMe continues slowly on, at the time of writing donations were just over $19,000, a long way from the $300,000 goal, or even the $200,000 vehicle. Leanne and Dale are realistic and are planning an ongoing series of fundraisers like the one recently hosted by AG Foods. Another larger one will possibly take place this fall.
Leanne says she’s continually humbled by the number of people who anonymously donate. “What’s amazing about it is that I’d say the last 10 or 15 donations, I have no idea who these people are. Every single person that donates I write an email thanking them and I ask them to go another step and share it on their social media.”
Dale adds: “So far it’s been amazing to see people’s reaction to the story and so many people are like ‘oh my God I want to help you out’. It’s been heartwarming because we’re in a weird time right now, the world is sort of in a struggle mode so it’s amazing that people even in that kind of mindset still reach out and help.”
“So maybe the world is not as doom and gloom as we think it is.”
Callum’s GoFundMe campaign can be found at gofundme.com/f/keep-callum-at-home-sweet-home.
