An Osoyoos family is working to raise hundreds of thousands of dollars in funds to help care for their disabled son, desperate to equip their lives to keep him home. Callum is 12 years old and is described as full of joy, sweetness and compassion. He has been diagnosed with a rare genetic disease called PURA syndrome, which his parents say fewer than 500 children worldwide have. He is also non-verbal, in a wheelchair and dealing with quite severe scoliosis after battling epilepsy and seizures. Caring for their son changed mom Leanne Scott and dad Dale Fuhr’s lives after they both left their respective careers and went back to school to become full-time ABM Neuromovement Practitioners. They now run a clinic in downtown Osoyoos, Move Therapies, helping people with minor to serious illnesses and injuries heal and move better. They also support many families with special needs to improve their quality of life. The two have managed, along with their son’s carer, to keep Callum carefully cared for, healthy and happy at home. But as it grows, so does the need for new equipment. “Callum needs special accessible equipment to stay in our home with us. We want to raise Callum, we don’t want Callum to be in any kind of government care,” Scott said. “It’s growing every day. By this point, we were able to pick him up and carry him and get him into tubs and out of his wheelchair and onto the floor and, drive him and get him into the van.” But with Callum now over four feet tall and 75 pounds, it’s hard to keep up. Fuhr said the vehicle they use now is a standard minivan and doesn’t provide what they need, as Callum can’t use the toilet and relies on nappies. “If we travel, which we have very often in children’s B.C [in Vancouver] and in Kelowna for specialty appointments, etc. It has to change on the road at that time,” Scott added. “Up until this point, we’ve literally been changing him on the side of a road, or in a park, or somewhere we can hide him as best we can. But it becomes much more inappropriate to have a 12-year-old boy naked for everyone.” Before the couple asked the city to build an accessible toilet with an adult changing table, they were changing Callum on the public bathroom floor. His parents care deeply about his dignity and his right to be cared for. “So that’s the biggest thing with the truck is we need a variable adult size, which means we need a big truck,” Scott said. “We’re looking at different options for what that next truck could be. And you know, how long is this truck going to be, this truck could be anywhere from $140,000 to $180,000 just with the configurations you can put on it,” Fuhr added. The two also worked for years to get an accessible playground. With the help of a close friend, she has started a GoFundMe to help fund their special needs equipment, which includes the van, hopefully equipped with a lift and changing table, and new lifts for their home to help lift Callum from The bed. out of the shower and into the living room. The number they are aiming to raise currently sits at $300,000. “It’s a big amount we’re aiming for. Unfortunately, that’s what these things cost,” Scott said. “It is strange to ask for this amount. It was weird asking for help, to begin with,” added Fuhr, explaining that they have been asked many questions about the amount they are aiming for and are more than happy to take on the cost of what they need when asked. The couple has delved into government funding and grant options, looking for anything that would help ease the cost. “There is government funding for children like Calum. Absolutely, there is. But it’s just not enough,” Scott said. “We’re taking what we can get from a funding point of view, we’ve signed up and solicited, supported and signed him up for whatever he can get. And he was doing really well until suddenly we couldn’t lift him any more.” The two said that since the beginning of the effort to meet government funding for health care costs, it has shown them more clearly the gaps that exist. “It seems a little bit like from an economic point of view, the funding hasn’t changed, and a lot of treatments are cost-effective, from decades ago,” Scott said. The parents hope their story will also bring greater awareness to the challenges families with special needs face and bring about immediate changes in the system. “It makes me feel like some of these times the services are decided by someone who has never used the services,” Fuhr said. Placing Callum in a care facility is not an option for the couple, knowing their son thrives because of his connection and family. They have seen him improve with the therapy they work with him. “We have to do everything we can to make sure that he stays with us and that every child deserves to stay with their parents,” Scott said. “If Calum ever ended up in a situation where he wasn’t living with us, I can’t even imagine what that would be like for him.” And more than that, they know how much Callum has touched the small community. “He needs to stay at home and he needs to stay in the community. Such children have a purpose. And they have reason to exist. And usually, they are very deep. And so keeping them in the community and keeping them at home is obvious,” Scott said. Fuhr and Scott expressed their deep gratitude to the people who have donated so far, helping the GoFundMe reach more than $20,000. “People surprise you with their generosity, their time and their willingness to help,” Furr said. “It was a really great experience doing this GoFundMe page…the last probably 10 to 15 names on the GoFundMe page. I don’t know these people, they’re just strangers,” Scott added, emotion overwhelming her. Donations have come in from strangers, fundraisers have been hosted by local businesses across the South Okanagan and both will continue, despite the daunting numbers that lie ahead. “We’ll keep him home. We will make this happen. Our “why” is pretty clear…We changed our entire lives for this child. We’re totally committed to him because he’s so committed.” The ‘Keep Callum at Home, Sweet Home’ GoFundMe campaign is here.
