Fighting for their 12-year-old son Callum has become a way of life for OsoyoosBC, couple Leanne Scott and Dale Fuhr.
Callum was diagnosed with a rare genetic disorder called PURA syndrome, which, according to the boy’s parents, affects fewer than 500 children worldwide.
Callum also suffers from epilepsy, seizures, and deals with scoliosis.
“He’s in a wheelchair, he can’t stand or walk, he’s swaddled, which means he needs 24-hour cognitive care and he’s speechless,” Scott said. .
To better care for their son, the family moved from Regina to Osoyoos, and the couple left their respective careers to become full-time ABM neurocare practitioners.
“Unfortunately, the cold weather in Saskatchewan was tough on Callum’s system and the wheelchairs didn’t get very far in the snow, so we entered ‘warmest place in Canada’ and found Osoyoos, ‘ said Scott.
“People seem to think it’s a huge sacrifice, but it’s a huge event. It wasn’t a sacrifice and it changed – his life trajectory has improved a lot since we became practitioners. “
Vernon, BC HandyDART passengers say newer buses are harder to reach
Read more
But as Callum grew, so did the demand for new equipment.
The family said they needed a lift in the house, one for his bedroom and another for the bathroom, as well as home and vehicle modifications.
“We have been able, up until this point, to care for Callum. Lift it up and out of bed, lift it off the floor, lift it up in a chair — but it’s very difficult to take care of on a daily basis,” says Scott.
Currently, the family drives a standard pickup truck that doesn’t provide the privacy and space they need to replace Callum, who is dependent on diapers.
“We really had to pull over and find the nicest places we could, but there were times when he was literally changed,” Scott said.
“Not only is it unsafe for cars to fly, but it’s also not dignified to be naked on the side of the road.”
Without new equipment, the alternative is group housing, which the family says is unthinkable.
“He was fun, he was funny and sweet and affectionate and he really wanted to be around people. He was so excited to be near us, to be around us. I can’t even imagine him being taken care of, it’s beyond my ability,” Scott added.
“All children will be able to stay with their parents. He is a 12-year-old boy; he doesn’t need care. “
The pair looked at provincial grants and grants, but said new equipment was not covered.
“As we started going down the path of discovering what devices were provided by our health system and the government, we realized that there were some gaps,” says Fuhr.
They are now reaching out to the community in the hope of raising enough money to buy the device.
They came up with a GoFundMe with a goal of $300,000. As of Thursday night, more than $20,000 had been raised, and a local organization had donated a portion of the equipment.
“We had a family background here in Osoyoos, called the Herrendorf foundation – they heard about our story through chit-chat around town and Kasondra Cohen from Herrendorf,” said Scott. decided to buy an elevator for our house.”
Fuhr and Scott say they are overwhelmed with the amount of support they have received so far.
“We will make it come true. We are the team of Callum and the people around us,” said Fuhr.
“The fundraiser at AG Foods was amazing, just to meet all the people who know Callum. He knows more people around town than I do.”
Although the goal is scary, Scott and Fuhr say they won’t stop until their son has his basic needs met.
“It’s weird asking for help for your son, for your family,” Scott said as she fought back tears. “You feel you can do it and we will, but we have to contact support because it’s not covered.”
You can find a GoFundMe campaign called “Keep Callum at Home, Sweet Home” Online.
