LONDON, Ont. (CCN) — A grassroots fundraising campaign launched Sept. 30 by Life Care Network is aiming to give a 50-year-old man with a rare neurological disease the care he says he is being denied.
The campaign has raised $19,104 as of Oct. 28 for Roger Foley, who has been a patient at London Health Sciences Centre since Feb. 5, 2016. The current objective is to raise $40,000 before the end of 2025.
The now 50-year-old lives with a rare, progressive neurological disease known as Spinocerebellar Ataxia Type 14 (SCA14), which causes deterioration of the cerebellum and spinal cord, leading to continuing problems with coordination, balance and movement.
Foley told The Catholic Register that he remains a patient at LHSC because the self-directed home care he desired has been withheld as an option from him by public health authorities. This denial has become increasingly problematic each year as Foley says the hospital has become a more inhospitable environment.
At various junctures over the years, Foley has been “repeatedly offered and pressured” by hospital staff to consider euthanasia. He said this persuasion campaign has amplified in 2025, and because he hasn’t chosen this option, he says he’s now being obstructed from key services and supports.
“On May 5, I got a letter from the director of the London centre, (informing me of) the removal of my specialized lighting when staff enter my room on May 7,” recounted Foley. “It wasn’t even much notice. They did that, and their lights not only severely hurt my eyes, but they also cause visual scarring and temporary blindness.
“I have to be fused in bed with coverings over my eyes to block out the lighting, and it doesn’t even help covering my eyes with my hands because their lighting is so bright it penetrates through my skin and hands. The heat from the outlets too — they’re directly above and to the side of me, so they’re in my line of sight.”
Foley was accommodated with amber spectrum lighting for years. Following some research, he, his brother and a friend devised a solution to put together makeshift ski goggles, stacking three separate visors to loosely replicate the amber filtration he medically requires but does not exist commercially. Because of his malformed cervical spine, he can only wear the goggles at most 10 minutes at a time.
Lighting is not the only hindrance Foley is experiencing. He said he is routinely subjected to dehydration and malnutrition and ignored for his oral medication and toileting needs. Because of the low fluids in his system, he is routinely on IV, a “painful and onerous process” that has scarred his arms.
The Register sought comment from LHSC, but did not hear back by press deadline. The hospital has declined comment to other media outlets covering Foley’s story.
Lino DeFacendis is a Catholic who founded the Life Care Network, a referral service to unite vulnerable and elderly clients with pro-life personal support workers (PSW). Through conversation with his friend Kathy Matusiak Costa, the executive director of the non-profit Compassionate Community Care, DeFacendis is determined to help Foley.
The funds raised on the LifeFunder platform so far have made it possible for two PSWs to enter the hospital each day in recent weeks for a couple of hours to get Foley fed and medicated.
“It’s just wonderful to see how people are just really just taking (Foley’s story) to heart and (thinking about) what they can really do,” said DeFacendis. “Prayer is absolutely number one and important. And of course, there’s faith and there’s good works. People are also understanding that he needs some tangible support in addition to prayer, all praise and glory to God, and it’s all His grace that’s making this happen.”
Foley praised DeFacendis, Matusiak Costa, Alex Schadenberg of Euthanasia Prevention Coalition, the PSWs and the generous donors.
“It means so much and I’m so grateful to the LifeFunder community, and it shows me that there are people out there that do care about persons with disabilities and human life in general,” said Foley.
DeFacendis is determined to provide Life Care Network clients a life-affirming alternative to medical assistance in dying (MAiD). He suggested this fundraiser for Foley could be an initiative that could be replicated for others in need.
“First, you should trial anything new within this context to make sure we are doing it right,” said DeFacendis. “Let’s get the kinks out. He’s probably the most difficult case one could come across. So, if we can do this, the others should be, I don’t want to say slam dunk, but they should be much easier.
“You know, it’s providential. This is the most difficult case in Canada or North America. Here we are, the first one, trying to make it work.”
He is working on behalf of a man, Foley, who wrote on the LifeFunder page that “despite my condition, I have fought tirelessly for my rights, dignity and the ability to return to the community.”
DeFacendis said “we are praying and hoping for guidance” to find a way to secure Foley a way out of the hospital into a home care option.
To learn more, visit https://www.lifefunder.com/roger/.
