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Category "Local News"

18Jan

Victoria police seeking thief who stole senior’s electric-assist bike

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Victoria police are looking for a thief who was captured by CCTV cameras stealing a senior’s brand-new electric-assist bike.

The theft happened Tuesday, police said, at an apartment complex in the 600 block of Toronto Street.

The victim, an elderly male, said he had purchased the electric-assist bike only a day prior, and that it was essential to his ability to get around the city.

The stolen bicycle is a black Raleigh Sprite IE Electric, similar to the one pictured below.


The stolen bicycle is a black Raleigh Sprite IE Electric, similar to the one pictured here.

Handout /

Victoria PD

CCTV footage shows the suspect entering a locked bike area via the building’s parking area and making off with the bike.

The suspect is described as a white male in his mid-40s, approximately six feet tall with a slim to medium build. At the time of the theft, he was wearing a blue parka-style jacket, blue jeans, hiking shoes, and a shiny black helmet on top of a dark baseball cap. He was also wearing a large backpack.

Images from the footage have been provided in the hopes that someone might recognize the thief. Anyone who does, or has seen the bike, is asked to contact Victoria police.


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17Jan

BC project that kept more drug-addicted patients in treatment expands

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A man injects himself at a bus shelter in Vancouver’s Downtown Eastside, Monday, Dec.19, 2016.


Jonathan Hayward / THE CANADIAN PRESS

An 18-month pilot project is being expanded across British Columbia after more than double the number of drug-addicted people stayed in treatment to stop them from fatally overdosing.

The initiative, led by the BC Centre for Excellence in HIV/AIDS and Vancouver Coastal Health, uses the same strategy that helped drive down the province’s HIV and AIDS rates.

Dr. Rolando Barrios, the centre’s senior medical director, says it involves tracking patients who don’t show up for appointments and uses a team of doctors, nurses and social workers to follow them through treatment to help with their needs such as housing and employment.

The pilot at 17 clinics in Vancouver involved 1,100 patients and showed seven out of 10 of them stayed in treatment after three months, up from three people, as part of a program that prescribes substitute opioids to curb drug cravings and ward off withdrawal symptoms.

Barrios says retaining people who are addicted to opioids like heroin and fentanyl in treatment is the biggest hurdle in the overdose crisis that has claimed thousands of lives.

He says the expansion of the pilot involves simple steps such as reminding patients when their medication is about to expire and having pharmacies connect with health-care teams when people don’t pick up their medications.


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17Jan

Most Canadians favour smoking ban in multi-family buildings: poll

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Practically nine-in-ten Canadians agree with banning smoking in indoor public spaces, public transit facilities and workplaces.


Sean Kilpatrick / THE CANADIAN PRESS

Most Canadians are in favour of prohibiting residents from smoking in apartment buildings and condominiums, a new Research Co. poll has found.

An online survey found that almost seven-in-ten Canadians (72 per cent) support banning smoking (tobacco and marijuana) in multi-family buildings, while one-in-four (25 per cent) are opposed to the prohibition.

Almost 74 per cent of women supported the ban as did Canadians aged 55 and above. About 75 per cent of  Quebecers and 74 per cent British Columbians were also in favour.

The poll also found that more than two thirds of Canadians agree with the federal government’s decision to implement plain and standardized tobacco packaging. This was one of several areas covered by Bill C-5, which also established guidelines for vaping products.

Almost 90 per cent per cent of Canadians agree with banning smoking in indoor public spaces, public transit facilities and workplaces, including restaurants, bars and casinos.

Additionally, three-in-four Canadians also agree with banning smoking in private vehicles occupied by children.

“The regulations that have been in place for years to deal with smoking across Canada remain popular,” said Mario Canseco, President of Research Co. “There is a high level of support for bringing multi-family dwellings to the list of places where people should not be allowed to smoke.”

The survey was conducted earlier this month among 1,000 adults in Canada. The margin of error is +/- 3.5 percentage points, 19 times out of 20.

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16Jan

Bolt drilled through a skull is rescuing patients with brain injuries

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Dr. Mypinder Sekhon demonstrates catheters and the new brain bolt that were used in a life-saving procedure at VGH in Vancouver, BC, Jan. 16, 2019.


Arlen Redekop / PNG

Brad Baylis doesn’t remember anything about the day last summer when he hit a moose while driving in northern B.C.

Indeed, everything the Prince George man knows about his close brush with death — not to mention the entire month afterward — he’s pieced together from friends, family and medical professionals who saved his life after the moose crashed through his windshield, sending Baylis careening into a ditch and trapped in his vehicle.

Baylis, 39, and the moose would be extricated from the vehicle and he would be airlifted to Vancouver General Hospital on life support. While he was in the intensive-care unit for a month, plastic surgeons would spend 10 hours perfectly reconstructing his shattered face and intensive-care specialists would make Baylis the first patient to get a new procedure called brain microdialysis.


Undated handout photo of Bradley Baylis and girlfriend Carla Lewis. Bradley Baylis of Prince George hit a moose near Fraser lake in 2018.

Nikola Bennett /

PNG

With Baylis on the verge of dying from his traumatic brain injury, Dr. Mypinder Sekhon and colleagues deployed newly acquired tools that allowed them to frequently monitor Baylis’s brain-tissue chemistry so they could tailor the amount of glucose and other metabolic supplements he needed intravenously. They were also able to do real-time monitoring of oxygen and blood-pressure levels in his brain to deliver medications with doses tailored to his condition rather than giving standardized doses.

“The impact with the moose caused major hemorrhaging in his brain and he was suffocating from a lack of oxygen while emergency crews were extricating him from the vehicle,” said Sekhon. “It was a horrible, horrible injury with diffuse swelling throughout his brain. Often with this kind of swelling, brain death will ensue. We had no option other than to try the bolt.”

The lumen (hollowed-out) bolt and accompanying disposable instruments are medical devices developed and manufactured by a Swedish company and, until recently, used mainly in research settings at Cambridge University in the U.K.

Neurologists drill a one-centimetre hole into the skull to place the bolt, which then allows doctors to pass a catheter through it so they can collect and analyze biochemical markers of brain activity (glucose, lactate and glutamate, among them).


Undated handout photo of Bradley Baylis in VGH.

Nikola Bennett /

PNG

The data is fed into an analyzer that gives a digital reading and then medical teams can adjust the amount of oxygen, glucose and nutrients that comatose and other brain-injured patients need to not only recover, but also to avoid permanent disabilities.

“It’s changed the way we prognosticate,” said Sekhon. “We can get a better idea of the disease process inside a patient’s brain. Before this, we would fly blind, essentially. You can give too much glucose and other supplements or not enough. Using this technique, we are now able to optimize the brain’s metabolism and personalize the care of the patient.”

Drilling holes into patients’ skulls is an admittedly invasive procedure that carries a small (0.5-per-cent) risk of infection or bleeding, but at VGH, microdialysis has been used so far on five patients, including Baylis (in the past five months), and four of them have recovered. (The fifth succumbed to the brain injury.)

After being in the ICU for a month, Baylis was then transferred to G.F. Strong for rehabilitation. He is overcome with emotion when he talks about the physical therapists there who helped him walk again, his girlfriend Carla Lewis, family members and doctors like Sekhon — all of whom “never gave up on me.”

While he hasn’t yet been cleared to return to his job as a welder, the father of three is incredulous that he’s been able to almost completely recover from a brain injury as severe as the one he had.


Dr. Mypinder Sekhon demonstrates catheters and the new brain bolt that were used in a life-saving procedure at VGH in Vancouver, BC, Jan. 16, 2019.

Arlen Redekop /

PNG

He hasn’t yet resumed driving and he’s in no rush to get back behind the wheel. When he got out of G.F. Strong a few months ago, he took the Northern Health bus back to Prince George and it was a trip that could have been terrifying and traumatizing but Baylis managed to take it in stride:

“During the latter part of the trip, the bus driver had to slam on the brakes to avoid hitting a moose. When you live in this area, you know this sort of thing is going to happen at some point. I don’t know if this last incident was luck or fate, but you have to respect moose, they are amazing animals.”

Sekhon says that when Baylis was airlifted to VGH he thought Baylis had only a 10-per-cent chance of surviving. But after a week, he came out of the coma and credits the new microdialysis tools for making the difference with his recovery. While the microdialysis tools are insanely expensive — startup costs of up to $500,000, then costs of up to $10,000 each time the suite of tools are used on patients — they would appear to be true lifesavers.

VGH is the only hospital in Canada using the microdialysis protocol and one of only a handful of hospitals around the world using it. A hospital in Calgary tried it for a while, but Sekhon said it became too expensive so it was abandoned. At VGH, donors to the hospital’s foundation covered initial acquisition fees, but now the costs are absorbed into the hospital’s annual operating budget.

Only in the last few years have specialists like Sekhon had access to tools that allow them to individualize treatment plans for patients. In 2016, Sekhon and colleagues were recognized for using brain-monitoring technology that helped salvage the neurological functions of a world-renowned freestyle skier after she crashed during an international competition. In that case, doctors drilled a hole into the skull of the 22-year old patient — Jamie Crane-Mauzy — so they could take real-time measurements of oxygen and blood-pressure levels in her brain, which enabled them to tailor medications and other interventions to her condition.

Sekhon estimates VGH will receive 20-30 patients each year who will benefit from microdialysis and other brain-monitoring. The hospital has developed a specialized neurocritical-care program consisting of neurosurgeons and intensive-care specialists so that patients with severe brain injuries can get such advanced brain-monitoring, increasing their chances of recovery.

A study published last year that tracked 113 patients with severe brain injuries showed that those who got care from the specialized team were 2.5 times more likely to have a full neurological recovery after six months.

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Twitter: @MedicineMatters

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15Jan

China death sentence dispute takes toll on B.C. tourism businesses

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An Air Canada jet takes off against a bank of fog from Vancouver International Airport on Tuesday morning. Late Monday, the federal government updated its advisory for travellers to China ‘due to the risk of arbitrary enforcement of local laws.’


An Air Canada jet takes off against a bank of fog from Vancouver International Airport on Tuesday morning. Late Monday, the federal government updated its advisory for travellers to China ‘due to the risk of arbitrary enforcement of local laws.’


Nick Procaylo / PNG

The death sentence given to Canadian drug trafficker Robert Schellenberg by a Chinese court has spooked Canadian tourists planning to visit the People’s Republic.

“Everyone is feeling it,” said Canadian travel agent Julius Yan, president of Laurus Travel. “The last couple of days, and especially this morning, we have been getting calls from people who are concerned and about half want to cancel their tour to China.”

Late Monday, Canada updated its advisory for travellers to China “due to the risk of arbitrary enforcement of local laws.” The Chinese foreign ministry then warned its own citizens that they could be “arbitrarily detained at the request of a third nation” if they visit Canada.

Tensions between Canada and China have been rising since Huawei CFO Meng Wanzhou was arrested in Vancouver for extradition to the United States after allegedly violating American trade sanctions against Iran.

Less than a week later, two Canadians — former diplomat Michael Kovrig and non-profit worker Michael Spavor — were arrested in China in apparent retribution.

Canadians are urged to exercise a high degree of caution when travelling to China, said Global Affairs spokesman Guillaume Berube.

Travellers may experience scrutiny by local officials and police while in China and the Chinese Embassy in Canada announced late in December that as of Jan. 1 adult travellers to China must be fingerprinted before a visa will be issued.


Julius Yan is the president of Laurus Travel, pictured on a tour in China.

handout /

PNG

“Chinese authorities may define certain behaviours and activities as ‘endangering national security’ that would not be considered as such in Canada,” warns Global Affairs. You may be detained for up to six months before being formally arrested in security matters.

Amid the latest diplomatic salvos over the Schelleberg case, Chinese foreign ministry spokeswoman Hua Chunying urged Canada to remind its citizens “to never come to China to commit serious offences such as smuggling or trafficking drugs.”

The death sentence to Schellenberg, who was already serving a 15-year sentence for his crimes in China, appears to be the last straw for wary travellers.

“Escalating tension between Canada and China is having a very negative effect on businesses like ours,” said Yan. “Some Canadians booked on our tours this year have called and emailed to express their concerns and we want to alleviate their anxiety.”

While Canadians are postponing and cancelling their trips, bookings from American customers are on the rise at Laurus Travel.

“In the U.S. it seems to be business as usual,” said Yan, who maintains that China is a safe vacation destination for average Canadians.

Schellenberg is far from average. He was jailed in B.C. for possession for the purpose of drug trafficking in 2012 after being found with heroin and cocaine. He has impaired driving and drug-related convictions dating back to 2003.

Tensions could put a damper on travel to China for the Lunar New Year, which starts in three weeks.


In this image taken from a video footage run by China’s CCTV, Canadian Robert Lloyd Schellenberg attends his retrial at the Dalian Intermediate People’s Court in Dalian, northeastern China’s Liaoning province on Monday, Jan. 14, 2019.

CCTV via AP

“Even though I have family in China, as a Canadian, I won’t be going there anytime soon,” said Clifford Marr, a public relations specialist. “I have also been warning people not to go to China or transit through China to other Asian countries like the Philippines.”

B.C.’s Minister of State for Trade George Chow has warned that a planned trade mission to Asia by B.C. officials in March could be postponed if relations between the two nations do not improve.

The Office of the Premier said that no firm decisions have been made about the trip.

China’s travel warning to its citizens puts at risk about $1.6 billion that 682,000 tourists from China spend in Canada each year.

More than 290,000 residents of mainland China visit Vancouver each year, according to Statistics Canada. Chinese tourists spend an average of $2,400 each per trip.

For those brave enough to visit China in uncertain times, bargains can be had.

UTO Vacation on Tuesday morning offered a nine-night China vacation package including return flights from Vancouver, Montreal or Toronto to Shanghai for $599, according to Travelzoo.

With files from Rob Shaw

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15Jan

‘TransLink debt’ from fare evasion tickets affects B.C. teens’ future

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‘If we had an equitable fare structure, including free transit for children and youth and a sliding scale for adults, we would have accessibility built in for the lifespan of all community members,’ says Viveca Ellis, coordinator of the #AllOnBoard campaign for free transit for youths. ‘We would not have people in the position of having to steal a bus ride because they can’t afford it.’


‘If we had an equitable fare structure, including free transit for children and youth and a sliding scale for adults, we would have accessibility built in for the lifespan of all community members,’ says Viveca Ellis, coordinator of the #AllOnBoard campaign for free transit for youths. ‘We would not have people in the position of having to steal a bus ride because they can’t afford it.’


Mike Bell / PNG

TransLink should immediately stop ticketing youths for fare evasion so they no longer accumulate the kind of debt that can affect their credit history for years, according to the #AllOnBoard campaign for free transit for youths.

What’s happening, said Viveca Ellis, coordinator for the campaign, is that young people end up with what’s known as “TransLink debt” that they can’t repay. That debt can follow them around for years and prevent them from getting a driver’s licence.

“We’re asking TransLink to immediately end the harm of ticketing,” she said.

“It’s the bad credit that really sets people up for lifelong poverty.”

Transit, she said, should be as funded in the same way as education and health care.

“If we had an equitable fare structure, including free transit for children and youth and a sliding scale for adults, we would have accessibility built in for the lifespan of all community members. We would not have people in the position of having to steal a bus ride because they can’t afford it.”

Ellis said the #AllOnBoard campaign has discovered thousands of low income youths with TransLink debt. Once the debt goes to a collection agency, a person may be prohibited from getting a driver’s licence and/or renewing their vehicle insurance.

Last year, TransLink said it wrote an estimated 16,000 fare evasion tickets at $173 each. Of that number, less than four per cent, or about 640, were written to minors. If a fare evasion ticket is unpaid after one year, it can increase by $100.

A stroller is pushed through one of the fare gates at Cambie and Broadway Skytrain station. (Photo: Arlen Redekop, PNG files)


A stroller is pushed through one of the fare gates at Cambie and Broadway Skytrain station. (Photo: Arlen Redekop, PNG files)

Arlen Redekop /

PNG files

A TransLink official said earlier that the the cost of providing free access to riders up to age 18 “would be in the tens of millions a year.” But the official said TransLink couldn’t provide a more detailed answer until it studies the issue in more depth.

In a survey in November and December last year, #AllOnBoard asked 24 youths if they had fare evasion fines. Some said they had paid off their fines; others replied by saying “I have like 4,” “Over $500” and “800.”

Not being able to get a driver’s licence was identified as the main impact of their fare evasion debt.

“I couldn’t get my licence,” one youth said in the survey. “I owed so much from years ago and even being on the platform without my ticket validated when I had a book of tickets to use but the officer wouldn’t let me validate it when I was in a rush.”

Vancouver Coun. Jean Swanson.


Vancouver Coun. Jean Swanson.

Nick Procaylo /

PNG files

Ellis said what the campaign has also found is that there are at least 11 different programs operated by charities and non-profits in Vancouver that pay off TransLink debt for at-risk youths. That means groups supported by city taxpayers end up paying the debt so the youths can access services.

That makes no sense to Vancouver Coun. Jean Swanson.

“It’s just a ridiculous, vicious circle,” Swanson said.

At Tuesday’s council meeting, Swanson’s motion for the city to endorse the #AllOnBoard campaign was moved to Wednesday. Eighteen people have signed up to speak about the motion.

#AllOnBoard has already has the support of Port Moody and New Westminster.

Last year, Seattle city council voted to spend $7 million ($9.1 million Canadian) to provide free bus passes to 16,000 high school students.

Calgary Transit addresses poverty in its sliding-scale fares based on income. A low-income monthly pass ranges from $5.30 for a single person household earning $12,699 or less to $53 a month for a household of seven people earning  $56,997 to $67,055.

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15Jan

Cancer drivers face rising costs and growing demand in B.C.

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George Garrett helps Karon Peers get into Garrett’s car before he takes her to a doctor appointment.


Jason Payne / PNG

Increasing auto insurance rates, volatile gas prices and rising demand are all making life more challenging for the volunteers who provide cancer patients with rides to their treatment.

The Volunteer Cancer Drivers Society is piecing together its $300,000 annual budget in private donations, which average about $100, and one-time grants from foundations, corporations and city councils of a few thousand dollars at a time, said president Bob Smith, the former CEO of Fraser Health.

In the three years since the Canadian Cancer Society defunded its patient ride program, the Volunteer Cancer Drivers who stepped up in their place have logged one million kilometres and 62,000 hours.

They have done it without a shred of steady funding. The drivers — who pick up patients for treatment, wait, and then deliver them safely home — donate about $50,000 in fuel reimbursements back to the organization to keep it running.

The United Way receives $15 million in provincial funding to deliver the Better at Home program, which includes providing rides to appointments for seniors, often with local non-profit organizations and volunteers.

However, Better at Home regards the Volunteer Cancer Drivers as a form of “medical transportation” rather than just a ride, which makes them ineligible for that funding, according to Smith.

“We don’t provide any clinical care, but we do provide emotional support for people going to treatment like radiation,” said Smith. “It’s a perplexing situation to me. We just want to care for frail and elderly people.”

So, the small army of 175 drivers and 10 volunteer dispatchers could use a financial boost as demand for their service is growing by 25 to 35 per cent a year, said Smith.

Costs are rising, too.

ICBC will increase auto insurance rates by more than six per cent this year and a provincial carbon tax increase April 1 will push B.C.’s dizzying gas prices even higher.

Drivers are required to carry $3 million in personal liability insurance.

Chief fundraiser George Garrett — and his fellow board members — works full-time to keep the money flowing, but he dare not take his foot off the gas.

“I was able to get $30,000 from then-finance minister Mike de Jong to get us started, but since then we’ve had no success with the (provincial government),” said Garrett, a former news broadcaster with CKNW.

The BC Gaming Commission also gave them $30,000 in 2017, but the society really needs ongoing funding to the tune of $20,000 a month to ensure its survival.

A steady source of funding “would make all the difference in the world,” he said. “We’ve been scrambling from day one and I worry all the time.”

With no offices or paid staff, the society applies 95 per cent of every dollar donated to services.

When the Canadian Cancer Society’s driver program was cancelled — citing increasing costs and falling demand — dozens of community groups took on the work of driving cancer patients, many of them with just a few drivers each.

Of the larger organizations, the Freemasons Cancer Car program operates in the Okanagan, on Vancouver Island, and in the City of Vancouver, Burnaby and Richmond. The service was launched with $1 million in member donations and continues to be financed by the Freemasons.

The Volunteer Cancer Drivers service operates in 13 municipalities from West Vancouver all the way to Abbotsford.

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15Jan

B.C. surgery wait list has grown faster than population, anesthesiologists say

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Surgical operating room.


Vancouver Sun

Anesthesiologists in British Columbia say the waiting list for medically necessary surgeries has grown to more than 85,000 patients.

The B.C. Anesthesiologists’ Society says since 2002, surgical waiting lists have increased by about three times the growth rate of the provincial population.

The society says its research up to the end of the 2018 fiscal year shows about one-third of those who require surgery have been delayed longer than the benchmark limit.

CEO Dr. Roland Orfaly says the purpose of a discussion paper released Tuesday is to signal that anesthesiologists want to work with the government and other health-care providers to find solutions.

The society represents 400 specialist doctors who work at every major hospital in the province and care for about 300,000 surgical patients every year.

The Health Ministry was not immediately available to comment.

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14Jan

Free transit for youths pitch to be made to Vancouver council

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Coun. Jean Swanson wants the City of Vancouver to support free transit for children and youths up to 18 years of age.

Council members will consider her motion Tuesday to draft a letter to regional officials in support of more equitable transit fares including a sliding scale for low-income residents.

Swanson said Monday that her No. 1 reason for supporting a campaign started by #AllOnBoard last year is to increase safety for youths and adults.

She said people can sometimes get stuck if they don’t have bus fare and have to walk home or take “rides with people they don’t know. That’s not safe.”

She also supports free transit to increase accessibility to the city’s amenities. She estimated it would cost a family of five in east Vancouver $20 bus fare to ride to beaches on the west side of the city.

“That’s ridiculous,” she said.

“It means a huge proportion of people in our city just can’t enjoy parts of the city that other people that have more money can enjoy.”

Swanson also believes that lower bus fares and improved transit service means fewer trips by car which will help reduce global warming.

Swanson said she’s had nothing but “positive feedback” about her motion.

Vancouver Coun. Jean Swanson.


Vancouver Coun. Jean Swanson.

Nick Procaylo /

PNG files

She doesn’t have any estimate on costs, she said, because this is a first step in figuring out how to create a more equitable transit system.

“It is to ask the regional bodies in control of this to come up with a plan and source of funding,” she said.

“Some of the technical details still have to be worked out.”

The #AllOnBoard campaign by the B.C. Poverty Reduction Coalition has already been endorsed by Port Moody and New Westminster.

Jill Drews, senior issues management advisor for TransLink, said the organization is working with government officials to explore what it might mean to bring in free fares for younger riders.

TransLink doesn’t know how many riders under 18 it has because it doesn’t track ridership by age, she said.

“What we have seen in other jurisdictions that have opened up fare free transit for youths, they’ve had a big increase in ridership,” Drews said.

Drews said the cost of introducing free fares for youths “would be in the tens of millions a year” but had no specific details on the amount.

“We’re doing some modelling and looking at how we can quantify that better,” she said.

‘We’re expecting the provincial government to step up and provide the financial support’ for a free transit plan for youth, says #AllOnBoard campaign coordinator Viveca Ellis.


‘We’re expecting the provincial government to step up and provide the financial support’ for a free transit plan for youth, says #AllOnBoard campaign coordinator Viveca Ellis.

Mike Bell /

PNG

Viveca Ellis, who is coordinating the #AllOnBoard campaign, said transit should have much more public funding so access is as equitable as health care and education.

“Given our provincial commitment to reducing poverty, we need the mayors’ council and Metro Vancouver to discover the impact of mobility and lack of affordability on all citizens,” said Ellis, leadership development coordinator for the B.C. Poverty Reduction Coalition.

“We’re expecting the provincial government to step up and provide the financial support to make it happen to implement these necessary measures.”

In Metro Vancouver, a maximum of four children under five can ride on TransLink for free when accompanied by a passenger with proof of payment; children aged five to 18 pay $1.90 concession or $1.85 with a Compass Card in one zone.

Last year, Seattle city council voted to spend $7 million ($9.1 million Cdn.) to provide free bus service to 16,000 high school students. Seattle is now the largest city in the U.S. to provide free, year-round transit for high school students.

In Toronto, students 12 and under ride for free.

Calgary Transit addresses poverty in its sliding-scale fares based on income. A low-income monthly pass ranges from $5.30 for a single person household earning $12,699 or less to $53 a month for a household of seven people earning $56,997 to $67,055.

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13Jan

Langley toddler with sun allergy receives liver transplant from dad

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Charlie Lock’s Christmas came with a very special gift.

On Dec. 4, doctors removed the Langley toddler’s liver and gave her a piece of her dad’s liver. The transplant, performed by surgeons at Sick Kids in Toronto, is one of the first steps in a complicated plan to give the little girl with a severe sun allergy a more normal life.

“The transplant went really well,” Charlie’s mom Bekah Lock told Postmedia by phone from Toronto.

“We’re not out of the woods yet, but we’re grateful for how well it went.”

The next six months will see more medical procedures for the two-year-old girl and her dad, Kelsey, who was discharged from hospital a few days after his surgery, but continues to heal as his liver regenerates.

In a few months, he’ll give his tiny daughter another gift — this time, a bone-marrow transplant — that will help to save her new liver from the ravages of porphyria.

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Two-year-old Charlie Lock and her mom, Bekah, in July 2018.

Nick Procaylo /

PNG

In July, two-year-old Charlie and her mom Bekah Lock met with Postmedia to talk about life with erythropoietic protoporphyria (EPP) — a genetic disease that is sometimes described as an allergy to the sun.

Even small amounts of ultraviolet light cause the toddler’s skin to burn, blister and swell. But it’s the invisible damage — the accumulation of porphyrins in her liver — that can eventually be life-threatening.

Charlie cannot go outside, not even on the cloudiest days, said her mom. The windows in the family’s Langley home are coated with UV-blocking film. To leave, she must be bundled into a stroller with a protective cover and then rushed to a vehicle with similarly coated windows.

She can’t go to a park, or visit a petting zoo, or have a play date at a friend’s house.

Her brief hours outside — the long walks her mom and dad would take with her before she was diagnosed a few weeks after her first birthday — have been forgotten.

“It’s a very small world that she lives in,” Lock told Postmedia in July.

“She’ll stare out the windows and point at the leaves in the trees. She knows what’s out there, but she’s never fully experienced it.”


A photo of Charlie when she was experiencing one of her first reactions to the sun.

Submitted photo – Bekah Lock /

PNG

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Porphyria, specifically EPP, can be excruciatingly painful. The family was prepared to adapt to a life without sunlight, but shortly after Charlie’s diagnosis, there was more bad news.

People with EPP have a shortage of a particular enzyme that metabolizes porphyrins, which help with the production of hemoglobin. Without the enzyme, porphyrins accumulate in the blood, reacting with sunlight to cause burns. In a small percentage of people with EPP, porphyrins also accumulate in the liver.

Like lightning striking twice, Charlie had the rare form of EPP, which destroys the liver. Tests showed scarring similar to that of an alcoholic.

Despite the risks associated with the procedure, doctors began planning a bone-marrow transplant, which could help the little girl metabolize porphyrins. But because Charlie has two rare genetic markers, a perfect match could not be found among family or the international database. Doctors decided Kelsey’s bone marrow, although not a perfect match, could at least halt the damage to the toddler’s liver and possibly help reduce the impacts of sun exposure.

Two weeks before the bone-marrow transplant was set to take place, Charlie became seriously ill. Her enlarged liver was pressing on her lungs, leading to pneumonia. Her tiny, sick body would no longer be able to handle the chemotherapy needed to destroy her own bone marrow in preparation for the transplant.

A new plan was created. Charlie needed a new liver, so instead of donating his bone marrow, Kelsey donated a piece of his liver instead. The procedure could not be done in B.C., so the family travelled to Toronto in late fall.


Charlie Lock after her liver transplant in Toronto.

Submitted photo /

PNG

When describing Charlie’s tumultuous year, Bekah Lock is cheerful and optimistic.

The young mom celebrates the small things, like being able to hear Charlie’s little voice — and her laughter — after she was removed from a ventilator after the transplant.

“We’re not all the way there, but getting those little pieces of her back has been so good,” she said.

Lock admitted it was tough for herself and Kelsey to be away from family over Christmas, but in the same breath, she expressed gratitude for the doctors, nurses and staff at the hospital, as well as for Ronald McDonald House, where the family has been staying while in Toronto.

“They’re taking great care of us,” she said.

After Charlie becomes stronger and gains some weight, the little girl will undergo chemotherapy in preparation for the bone-marrow transplant. The family plans to remain in Toronto for that process and doesn’t expect to return to B.C. for about six months.

“It’s out of our hands,” said Lock. “We know that there will be ups and downs. It never goes perfectly to plan. But right now things are good, so we’re just going to celebrate that.”

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