Why Charlie Gard’s life matters

Charlie Gard - UK Supreme Court

Photo Credit: Garry Knight – https://www.flickr.com/photos/garryknight/31363621202

Charlie Gard passed away on July 28, 2017. Click here to read Charlie Gard, an epilogue.

My original post is shown below.

By the time you read this post, Charlie Gard may have been taken off life-support.

Pope Francis and Donald Trump actually agree on something – Charlie Gard’s right to live.

Strange are the ways of the world.

Charlie is a ten-month old child in the UK with a terminal mitochondrial disease.  He has severe brain damage and has been on a ventilator for months.

Charlie’s parents want to take their son to the United States for an experimental treatment. A treatment that could potentially improve his quality of life. They want what they believe is best for Charlie.

They understand that it is not a cure.

Mitochondrial diseases are severe and horrible. There are no cures. They are uniquely devastating. It is always ultimately terminal, especially when it strikes an infant – the little ones are the hardest hit.

Charlie has suffered catastrophic brain damage. The doctors are of the opinion that since the treatment that Charlie’s parents are seeking will not reverse the brain damage, it is pointless.  Charlie cannot be “cured”.

The judges agree.

The UK and EU courts have ruled that Great Ormond Street Hospital may take Charlie off his ventilator, against his parent’s wishes.

It was not about the money, or the cost to the Government. Charlie’s parents have raised money over $2 million CDN through gofundme to cover the expenses. There were offers of help from high places – doctors in the United States, President Trump, the Pope, to name a few.

I want to pause here.

Charlie’s parent’s situation is difficult to relate to when you are watching from the sidelines. I realize that a lot of people, agree with the doctors’ point of view on this.  They believe that Charlie’s parent’s judgment is clouded by grief, and that physicians, especially at a world-renowned children’s hospital, cannot possibly be wrong.

But, consider this: If doctors only treated patients who were guaranteed to be cured, where would that leave us? Does Charlie Gard not have a right to treatment, irrespective of his chances to be cured?

Treatment and hope are not pointless. Believe it or not, recovery, even from severe brain damage caused by a mitochondrial disease, is potentially possible.

I have stood in Charlie’s parents shoes. I still live it, every day.

Anakha - Why life mattersAs some of you have read, my daughter also has a rare terminal mitochondrial disease. She suffered devastating brain damage (progressive cavitating leukodystrophy) when she was nine months old. I too was told that my daughter will just continue to get worse, that there is no treatment, no cure. The time and resources needed to treat her were not worth it. She was practically dead to them, just like Charlie Gard.

And just like Charlie’s parents, I refused to listen to the doctors.  As every parent of a terminally ill child will do, I researched, reached out, and never stopped trying to find something, anything, to help my daughter.

And my daughter did not get worse.  With treatment, she stabilized.  And with the time that treatment brought her, she regained many of the skills that she had lost.

Her doctors can only attribute it to neuroplasticity – the brain’s ability to reorganize itself.  My daughter went from having the motor functions of a two month old infant at 10 months old, to now being able to speak, orally eat, use a manual wheelchair, and even a walker, at 2.5 years old.

I know it sounds like small steps, but believe me, these are huge for our daughter and us.

One year after my daughter suffered her catastrophic brain damage, new peer-reviewed research has reported two children with the same rare mitochondrial disease as my daughter, alive at 12 years old and 16 years old. There is evidence that the treatment my daughter received – not a cure – definitively helps to stabilize and even improve their condition.

Yes, they are still disabled, and ultimately still terminally ill.

But does that matter?  They are alive, and living.  My daughter has been given the gift of time, time with me, time to be alive.

I know many children with life-limiting diseases who are tube fed, on ventilators, who are quadriplegic, blind, deaf, who cannot hold up their own heads. But, I see the light in their eyes as they watch Frozen, their smiles when they feel the sunlight on their skin, the joy that they bring to the world.

Charlie’s parents want to give Charlie a chance to live – not a cure – but a chance to experience life. They understand that it is the merest of chances, but they still want to try.

But the State did not agree.

Good, caring, loving, conscientious parents have been told that faceless, nameless entities  know what is best for Charlie, better than his parents,  better than other doctors, including mitochondrial disease specialists at other hospitals who are willing to treat Charlie and respect his right to life and treatment.

The State has declared that Charlie Gard has no right to live. Charlie’s parent’s right to choose medical treatment for their child has been stripped from them.

It is absolutely appalling how cruelly Charlie Gard and his family have been treated, and I cannot shake the fear that one day, this could be Anakha.

I pray that the most powerful man in the world and the revered Pontiff can help little Charlie Gard.

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Canada 150 – Things I love about Canada.

From the perspective of a Torontonian… Canada 150 - Things I like about Canada

I am not sure when it happened. I first realized it while I was sitting in a restaurant in Kerala, India.

“I am ready to go home,” I told my wife as we were waiting for our dessert.  We had been vacationing for nearly a month.

“You mean…” her voice trailed off as I completed the sentence for her, “Yes, back to Toronto.”

We both went silent for a while. The implication of what I had said was significant to both of us. Until then, India was always home, Canada was where we lived. Somewhere along the way, without us realizing it, things had changed.

Canada, or more specifically, Toronto was home now. And what better place to call home?

Hardcore Torontonians may refer to me as a 905er – someone who lives in the suburbs of Toronto. I am not offended; it’s true. In my view, I have the best of both worlds – I work in downtown Toronto and live about a thirty-minute drive away in Mississauga.

Looking back, I cannot think of any major event that contributed to this transformation. Though, I can think of myriad little things that probably brought about our change of heart.

So, on this 150th anniversary of Canada, I would like to share with you “Things I love about Canada.” After all, I have been a part of it for the past twenty-five years! Please switch to fullscreen to watch the below video.

Just a note, the video below looks better in full-screen mode.

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Work-life balance – It is no longer one or the other, it is always both

Work-life balance

My mobile phone buzzes, cajoling me to pick it up.

I look up at the clock on the cable set-top box, the time is 11:32 PM.

I ignore the phone and go back to the TV.

It’s Friday night, I am binge-watching the fifth season of House of Cards with my wife.

The phone vibrates again.

Reluctantly, I pick it to see if someone is sending me another joke on WhatsApp. Folks in India have just woken up.

It’s work.

I am not on call, nor working on a group project or deliverable. I don’t have customers on the other side of the globe.

Briefly, I consider replying to one of the emails, then decide against. I do not want to get sucked into a work-related discussion in the middle of the night on a weekend.

It’s family time; work can wait.

If the above feels like a movie that you have seen before, you are not alone.

Welcome to the world of real-time communications where work never stops, unless you chose to. And, work-life balance seems a lofty, unrealistic goal for a lot of people.

To some extent, we may have brought this upon ourselves.

Our obsession with staying connected every second of the day plays right into it. Everyone knows that every waking hour of the day you are online and checking notifications as they come in. So if you get the odd “Hey, got a minute?” you have no one else to blame.

Realistically though, in today’s world, can you really disconnect?

And, if you do disconnect, will it be a career limiting move (CLM)? What if you don’t respond to work-related communications after hours and your colleagues do?

On the flipside, there may be an upside here.

The same technology that keeps you working all the time also allows you to always stay connected to your personal network. Most employers have given up or cannot control what you do with your personal communication devices that you bring with you to work. Your personal interactions are no longer confined to evenings and weekends. There is nothing preventing you from making a restaurant reservation online, checking your Facebook timeline, or replying to a personal email from work.

So, perhaps there is some middle-ground here.

Maybe the new norm is a work-life balance where work never stops and your personal interactions also never really stop — even during normal “work hours.”

Then again, it is all about perspective.

For a lot of young people, probably this is the only model that they have seen and it does not phase them. They are comfortable with the overlap of work over life and vice-versa.

It is no longer one or the other; it is always both.

As for me, somewhere along the way, I made a choice — work time and personal time are like church and state to me.  I try and keep them separate to the extent possible.

I am old school.

And, if not replying to emails in the middle of the night is considered a CLM, so be it.

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When minimalism starts making sense

Foray into minimalism

My foray into minimalism

I want to make sure that I don’t come through as a fake as I write this post.

Minimalism, as a lifestyle, is not something that I have ever consciously aspired to. If anything, I would be closer to a Maximalist who believes in the “Life is too short, so, have a good time!” philosophy.

A true epicurean!

Though, I may not be ready to take it to the “Live rich and die broke” level.

For that matter, I was not quite sure what minimalism entailed.

Large white sparsely furnished spaces and artwork that show small objects on large canvases come to mind.

My curiosity was piqued when I looked up the profile of Tynan, a blogger that I occasionally read, and it said, “I only have one pair of pants and two shirts.”

It was clear that it was a choice that he had made and not one driven by the lack of money.

So, I decided to explore minimalism a bit more.

To say that interpretations vary, would be an understatement. There were people who sold or gave away their “things” to declutter their lives; people who could fit all their worldly possessions in a backpack; people who quit their jobs and took up nomadic lifestyles…

Mostly stuff that I could not relate to.

It appeared that minimalism did not always translate to “cheap.” On the contrary, some of the practitioners of minimalism left me wondering, if they were independently wealthy. The pursuit of quality vs. quantity appeared to be the underlying sentiment – be it things, jobs, relationships, etc.

Then I stumbled upon a question that I could finally relate to but did not have an answer for:

“When do you know that you have enough?”

Not surprisingly, if you Googled this question, almost all the answers you get are related to money – enough money to retire; enough insurance etc. While the requirement of money is a no-brainer, I decided to explore other aspects of “enough” as it pertains to a minimalist lifestyle to see how I compared.

Do I have enough home?

I would say, yes. Having sold my house and moved to a condominium, I seem to be on the right track here. In case you are wondering, I have no plans to sell my house and hit the road or join a monastery, yet.

Do I have enough car?

“Yes,” to that too. Though I had no minimalistic intentions while replacing our gas guzzlers for hybrid cars, I will take an “X” on that box.

As I went through a mental list of “do I have enough?” that covered food, clothes, furniture, artwork, etc., I stopped at electronic gadgets.

Do I have enough electronic gadgets that make me happy?

Sheepishly, I have to admit that I have more gadgets than I need, or have a use for.

I have an opportunity to take my first step towards minimalism – declutter my tech junk draw.

But then, why would I give these things away? I have been holding on to them “just in case” I needed them in the future. Not to mention the fact that I paid good money for some of it.

So, I read more about the virtues of decluttering – selling or donating stuff that you don’t need.

I got more questions back.

Are the things that you don’t need – in my case, old smartphones and other mobile gadgets – adding value to my life and making me happy?

The answer was a resounding “no,” they are sitting in a draw and certainly not adding any value or happiness to my life.

Could these things potentially add value to someone else’s life, or make them happy?

I had to reluctantly admit that it potentially could bring happiness to someone else.

Then, why not give it to them?

I was stumped. The logic made sense.

There is something liberating about being able to let go, even when they are only old iPhones that you no longer use.

The feeling of enough!

So, I have decided to give away a few gadgets that I have not touched in over a year.

My first foray into minimalism…

So, do you think that there is merit in minimalism? Click here to add your comments.


A close encounter of the bike kind

Whether you are a rider or a driver, bike lanes can get you into trouble 

Bike lane rules

By Dylan Passmore – https://commons.wikimedia.org/wiki/File%3ABike_Lane_Toronto_2011.jpg

The shrill sound of the bicycle bells made me slam on the brake. I was in my car, turning right from Yonge Street onto King Street, in downtown Toronto.

The light had just turned green.

The two cyclists appeared to come out of nowhere. Not slowing down, they zipped straight through the intersection. Bells still clanking, one of them gave me a one-finger salute as he rode on, blending into the traffic.

It was a close encounter of the bike kind!

I was shaken, it could have ended badly.

In my mind, I had the right of way over the cyclists coming up behind. Frankly, I had enough on my plate trying to time the pedestrians crossing the road to worry about bicycles approaching from the rear at 20 km/hour.  Yet, from the bicycle bell feedback I was receiving, it was clear that these roadway interlopers did not agree with my understanding of the auto/bike détente treaty etched into my brain.

I drive a car and ride a bike; so I decided that I owed it to myself to figure out the rules around bike lanes. After all, bike lanes are a means to keep the peace between competing interests of motorists and cyclists. They need to be regulated; the rules should be both well understood and practical to observe.

Personally speaking, my bike riding is an activity of pleasure and exercise. Driving, on the other hand, is to get me somewhere that I need to get to. I accept that some folks use two wheels to get to places that they must be at – such as work, the beer store etc. You can also argue that exercise and pleasure are “must do’s”.

Naturally, I am more invested and protective of things that govern my “must do’s” rather than those things that are “nice to do”.

Before I get into the confusing rules that govern “on-street” bike lanes in Canada, let me lay out some facts.

When it comes to “on-street” bike lanes, Toronto with 128 km is second only to Montreal’s 230 km, followed by Vancouver (60 km), Ottawa (50 km), and Calgary (30 km). The other interesting factoid is that roughly two-thirds of those that use bicycles to get to work are men.

The “on-street” bike lanes, at intersections, are the epicenter of confrontation between automobiles and bicycles. My recent encounter with the two cyclists is a prime example of the confusion and the potential danger that these intersections create.

So, what exactly are the rules for a right-hand turn in Toronto where bicyclists are also in play?

Below are several opinions gleaned from a recent Globe and Mail article which in my view appear to be both contradictory and prone to misjudgment:

“When turning right across a cycle track, drivers need to yield to cyclists who are proceeding straight – there is signage along cycle tracks to inform road users of this yield condition,” said Steve Johnston, City of Toronto spokesman. “Drivers must signal and check their mirrors and the blind spot to their right to make sure they do not cut off a cyclist.”

Not an easy feat when considering the bicycle speeds and the fact that not all cyclists have functioning headlamps or reflective gear to make them visible via a rear-view mirror or by turning one’s head.

“Where a bike lane is marked with a skipped, not solid, white line, drivers may enter or cross the bike lane to turn right,” Johnston said.

The skipped or solid distinction is rather difficult to see when the length of such a distinction may be barely one car length and sitting alongside the right side of your vehicle.

“If a motor vehicle is within the intersection waiting to turn right – blocking the cyclist’s path from the bicycle lane to the other side of the intersection – the cyclist should wait until the way is clear before proceeding through the intersection,” said Ontario Ministry of Transportation (MTO) spokesman Bob Nichols.

Clearly, the two speeding cyclists that I nearly ran over, had not read this rule.

“Getting into that bike lane – when there’s not a barrier or solid painted line – is something drivers should do – as long as it’s clear”.  “Normally, when turning right you should be close to the curb before the intersection,”  “This means that where there is a bike lane, you should move into the bike lane before the turn – obviously as far as is reasonable,” says Angelo DiCicco, Young Drivers of Canada general manager.

If the above does not make sense to you, check out this image titled “Right turn and bike lanes.

“If a vehicle is making a right turn where there is a bike lane, any cyclist coming through is considered to have the right-of-way and the driver must yield. If there is no bike lane, the motorist is always required to ensure that the way is clear before turning, Hayward Gulati said. “Sometimes cyclists will go left around the vehicle to avoid a right-turning vehicle, but she said it is not required.”

What?  Hayward Gulati seems to be contradicting Angelo DiCicco, or maybe he is just erring on the side of caution!

The presence of a dotted bike lane at any intersection appears relevant.  Its presence should indicate that a vehicle can enter the bike lane and ready themselves for a right turn.  I’ve observed mostly the opposite.   Most vehicles do not enter the bike lane, with their drivers relying on their falcon-vision and exceptional timing to make their right turn.

It has been reported that there are roughly 1,200 collisions per year that involve bicycles.

My guess is that 1,199 occur at the intersection of Yonge and King.

So, as you enjoy the summer, drive and ride safely!

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Bike Lanes - Joe TotinoAUTHOR: Joe Totino

Joseph spends his time waiting for summer to arrive. He has interests in cognitive psychology and believes himself to be a decent chess player. He is based in Toronto and is an Engineer and management professional who works in the Telecom industry.

When most of your friends are millionaires…

Chicago condo I sit sipping coffee at my cousin’s 54th-floor condo that overlooks the Chicago Navy Pier.

For a second, I consider making myself a Mimosa from the well-stocked bar but quickly reject the idea. It’s not noon yet. Need to stay disciplined, even though I am on vacation.

As the tour boats go by, the sun bounces off the rippling waters of Lake Michigan, almost blinding. On the other side, I can see the winding road and the towering skyscrapers.

It’s a glorious day. The view is spectacular!

The interior of the apartment is no less impressive. With over 3000 square feet on one level, it is sprawling, and tastefully done. I could get used to this.

It suddenly occurs to me, most of my friends are millionaires!

No, the rarified air on the 54th floor has not impaired my judgement. It’s true! Most of my friends are millionaires, accidental millionaires.

The skyrocketing real-estate market in Toronto has propelled a lot of ordinary people into the millionaire’s club. If you live in the Greater Toronto Area (GTA), have a detached home in a nice neighbourhood, and are not a millionaire, you are likely in the minority.

Obviously, if we start talking about liabilities, net worth and such, not all make the cut. But, from an assets perspective, you cannot dispute the fact that a lot of them are worth seven figures.

Good for them!

However, when a modest house in Mississauga, a middle-class suburb of Toronto, sells at a price higher than a large waterfront condo in a prestigious building in downtown Chicago, something is amiss.

And, what’s with the 33% year over year price growth? How long would it be before we make it to the “Five most expensive cities in the world?”

People must be making way more money that I think they are, or, they are braver than me. I go back to the time when I fretted about a mortgage which was nearly 2.5 times our gross family income, which wasn’t a whole lot, to begin with.

But then again, why not just make hay while the sun shines? They do say that unless you speculate, you don’t accumulate!

As the financial pundits and the government debate the demerits of a runaway real estate market, there appears to be at least one group of people who are clearly disadvantaged by this phenomenon, the young home buyer – our children.

I remember a friend’s daughter, a millennial, mentioning that she felt that she would never be able to afford a condo or a house in Toronto. A few years into a Marketing job, the size of the mortgage required to own a home was downright scary and unaffordable for someone like her.

Millennials have it tough, especially if you live in Canada.

New rules require them to have more money upfront, while the amount they can borrow goes down – which is probably a good thing. Unlike their parents, they are less likely to be able to count on government guarantees as they get older. And, as the aging population of Canada outnumbers the young, the prospect of becoming part of the sandwich generation is real.

Not a lot of good news here.

Perhaps the parents who rode the real estate wave to millions can help out with their children’s first down payment. But before you do that, you may want to read this article by Rob Carrick titled “Are we pushing millennials into a financial abyss of home ownership?

I have a sense of déjà vu.

I have lived in Mumbai where tiny apartments cost a tonne of money and the middle-class families had to move far away into the suburbs to find an affordable apartment.

Toronto is not Mumbai, but it could become a Hong Kong or Tokyo.

I better hang on to my condo…

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