British Columbia

B.C. student with rare condition struggles for continued government support

Anthony Briltz, 18, fears life after high school when he may lose the support needed to stay alive.

Anthony Briltz, 18, fears life after high school when he may lose the support needed to stay alive

Anthony Briltz suffers from a rare condition called centronuclear myopathy which affects his muscle tissue. He's struggling to maintain his current level of medical support after he turns 19 and leaves his high school. (Rafferty Baker/CBC)

It's graduation season, and high school classes are winding down. But at Kwantlen Park Secondary in Surrey, B.C., Grade 12 student Anthony Briltz didn't join his classmates at this year's commencement.

The ambitious 18-year-old, who plans to work toward a law career, will be returning to Kwantlen Park next year to do Grade 12 a third time.

Briltz was born with a rare condition called centronuclear myopathy, which affects his muscle tissue. As he grew up, he continuously lost strength and mobility.

"My lung collapsed when I was nine months old," said Briltz, sitting in his high-tech wheelchair with tubes inserted into his throat and stomach. "I've only had one lung practically for my entire life."

In 2012, on his first day of Grade 10, Briltz suffered a mucous clog in his trachea. The incident left him passed out in his chair and led to the collapse of his remaining good lung. 

"My right lung popped and they said, 'Alright, he's going to die. Say your prayers, he's had a good life.' I woke up from my coma and they said, 'How are you still alive?'"

Briltz relies on a ventilator for every breath of air and said he essentially has one quarter of one lung to work with. His meals consist of canned formula fed through the tube inserted directly into his stomach. He can control his chair without much help, but relies on nurses and caregivers for just about everything else.

Constant medical support

As long as he's in the school system and under 19 years old, Briltz is assisted by nurses — both registered nurses and licensed practical nurses — and educational assistants. 

Samantha Cantner, an LPN who works with Anthony Briltz, inserts a suction hose into Briltz's throat to remove mucous from his trachea. (Rafferty Baker/CBC)

But in December, he'll turn 19 and lose the nurses who take care of him throughout the night.

"I can be sleeping and all of a sudden a plug, or something, can come out and I can't breathe, so I'm sleeping while I'm choking," Briltz said.

He should have enough credits to graduate in February, but he's arranged to stay at Kwantlen Park until the end of the school year in order to keep support from a nurse during the daytime.

Aging out

For adults with significant developmental disabilities, Community Living B.C. is set up to offer support. But with no cognitive impairment, Briltz won't have access.

"He does not qualify for Community Living B.C. only because he does not have a significant intellectual impairment," said Kwantlen Park learning support teacher Randy Freeman.

Kwantlen Park Secondary School learning support teacher Randy Freeman has taken special interest in Briltz's case, even visiting him at home and in the hospital. He delayed his retirement by a year to try to see Briltz through to the end of Grade 12. (Rafferty Baker/CBC)

"That's the only criteria, I see, that's causing all these transition difficulties."

Freeman has been working with Briltz for nearly six years. The 60-year-old teacher was planning to retire last year, but decided to stick around another year to try to see his favourite student finish high school. 

"I'm going to retire this year. I feel confident that Anthony is looking after his affairs enough that he's going to figure things out," said Freeman.

"I really want to see him entering the law profession or some discipline that deals with social justice. It may not be law in the end, but some strand of social justice, because he speaks well. He speaks honestly," he said.

Last year, Briltz wrote a paper for his Social Justice 12 class decrying the situation in which he finds himself.

"For some youth, turning 19 … just straight up sucks! I know a lot of my peers are looking forward to being 'of legal age', but for me, my life will get more difficult," he wrote in the paper, titled Funding for youth with disabilities: Why is funding based on IQ?.

"He will be provided with some funding once he turns 19, but he has basically been told that he takes the funding and hires and fires as need be and he's going to have to look after it himself," said Freeman.

Choice in Supports in Independent Living is a program for adults, like Briltz, who don't qualify for CLBC.

CSIL funds are meant to help adults with disabilities live independently by enabling them to hire their own caretakers at an hourly wage.

But the program isn't intended to cover 24-hour care.

"I know that the level of funding that's going to be available for him is not even going to come near to providing the level of support that he's getting right now," said Freeman.

Teacher Randy Freeman poses for a photo with 18-year-old Anthony Briltz. (Rafferty Baker/CBC)

'A brave and bold spirit'

Inspired by movies with social justice themes like The HurricaneErin Brockovich, and Dead Man Walking, Briltz has developed a strong sense of what's just, and he's ready to keep fighting, saying that his life quite literally depends on it.

"I'm not going to stop until they change their mind," he said, adding that he's enlisted his MLA, Bruce Ralston, to take up his cause.

"He's a brave and bold spirit, and he has physical limitations that don't hold him back in many ways, but he does deserve personal support of a kind in order to assist him in his personal goals," said Ralston, who will attend Briltz's next transition meeting.

"One of the principles in our society is that people should be given an opportunity to realise their full potential. Anthony has huge potential and he needs some support to get there."

With files from Jon Hernandez