Half paralyzed and barely able to speak, Heather Rose smiles watching her two grandsons from a reclining chair.
The eldest, just shy of his second birthday, has learned to switch on the suction tube she needs dry her mouth because she’s unable to swallow.
Diagnosed with multiple sclerosis nine years ago, her health slowly deteriorated to the point that she can only stay in her Langford home with 24-hour care, much of which comes from family members.
But seeing what the controversial “liberation procedure” has done for others in her position, the 52-year-old hopes she too can be set free from the grip MS holds on her life.
The prospect has her family-turned-caregivers taking on the new role of fundraisers. They need to raise over $20,000 for medical expenses and travel to a hospital in Tijuana, Mexico, one of the few places prepared to treat MS patients in such late stages of the disease.
The procedure, similar to angioplasty, opens blocked blood vessels to ease a condition present in most MS cases called chronic cerebro-spinal venous insufficiency. It’s been seen to relieve the paralysis and loss of physical sensations that come with MS.
Last month the federal government committed to covering the cost of clinical trails of the procedure in Canada, but Heather’s health can’t wait for the procedure to be approved here.
“She needs to get there (to the clinic) as soon as possible. We would have liked to have her there yesterday,” says Heather’s sister Linda Talbot, calling the procedure one of the last hopes for treatment.
The family has stood by while Heather cycled through chemotherapy, drug treatments and holistic remedies to manage the disease.
“Tried everything,” Heather says, her voice comes out of her like a gurgle and she strains to repeat the words until her 26-year-old daughter Alicia Rose understands and says them back to her.
Alicia said she’d be happy if the procedure allowed her mother even a few months with basic control over her own body — off the feeding tube and able to speak clearly.
“To see her improve in any way, even if it doesn’t last, it will be worth it,” says Alicia, holding her six-month-old son. “She loves her grandchildren, loves watching them, and wants to be able to get up and play with them.”
Earlier this year, Langford resident Lesley Clarke fundraised $10,000 to receive the liberation procedure from a clinic in Seattle. She left in a wheelchair and came back walking and full of energy.
The family got advice from Clarke about how best to fundraise and hope to repeat her success with bottle drives and community events.
This Saturday, July 23, the Rose family is holding a barbecue and car wash in the parking lot of Rona from 11 a.m. to 4 p.m. with all the money going towards her treatment.
Later in the month they’ll have a silent auction, which they’re looking for businesses to contribute items for.
Between events they’ll also be collecting bottles in some neighbourhoods, after delivering flyers to homes to let residents know when they’ll be coming around.
“We’re hoping to have the money we need by September,” Talbot says, noting Heather will aim to come out to events to thank everyone who donates. “We’re grateful for everyone’s generosity. …This procedure is going to make a huge difference in her life and ours, to have her back to normal again. We all want to see her walk again.”