Hi Everyone,

As a educator, I often look for ways to help our children become empathetic, caring, and compassionate individuals.  When kids leave my classroom, I want them to strive to make the world a better place; I want them to understand that they CAN make a difference in the greater world around them.  I want them to know the importance of helping others.

There are many ways that teachers help guide their students along the path to caring – books, news articles, projects, and fundraising activities all come to mind as examples I see in schools across this country.  All of these activities are well and good in the classroom, but none if it matters if we don’t stand in front of our children and lead by example.  None of it matters if our students don’t see us practicing what we’re preaching.  To me, taking a moment to fight to save the life of Jasper More (pictured left) should be on top of everyone’s list of “To Do’s” today as we seek to set that example for our kids.

2 1/2 year old Jasper More was recently diagnosed with an ultra-rare enzyme deficiency called MPS VI.  Essentially, Jasper lacks an enzyme in his blood responsible for breaking down cellular waste in his body.  This waste then builds up and stores in his bones, tissues, organs, and muscles.  Progressively, this disease devastates the body.  Internal organs begin to swell, joints begin to stiffen, and heart and airway disease begin to take over.  Along with a host of other catestrophic symptoms this disease leads to a shortened stature and a severely shortened life span.

When a child is diagnosed with this disease – and there are only 8 cases in Canada – the news is devastating.  I know this because my son, Isaac (right), was diagnosed in 2006 at the age of 18 months.  At that time, we were told that our beautiful little boy may not reach his teens and that the years leading up to those teenage years would be filled with painful surgeries and horrific symptoms.  My wife and I were sick with fear – I lost 40 pounds in a few weeks, and we were devastated that the future for our little boy was forever changed.  At that time, Hope seemed lost.

However, we soon learned that Hope wasn’t lost.  A treatment for this disease was available, albeit not in Canada.  The treatment consists of a weekly infusion of a synthetic version of the enzyme that children affected with MPS VI lack.  Studies have shown that this treatment dramatically slows the progress of the disease, if not halt it altogether.  It’s not a cure, but it is certainly a lifeboat for our children until a cure can be found.  Because we lack an Orphan Drug Policy here in Canada, we had to apply to have this treatment brought to Canada using the Federal Government’s Special Access Program (SAP).  We were quickly granted the right to bring the treatment (ERT) to Canada – contingent on the province funding the administration of it to our Isaac.  And herein lies the problem – treatment costs for a small child can start around $300,000 annually and escalate to $1,000,000 for a young teenager.

Through our heartfelt lobbying of the Ontario Liberal Government, assisted by the tireless advocacy of MPP Elizabeth Witmer, we were successful in securing funding for Isaac.  Today, because of his treatment, Isaac is a happy 7-year old boy who loves to read, play with his toys, and spend time with his best friend, his younger brother Gabriel.

The battle for Isaac’s life was won, a battle that should never have taken place in the first place.  With the success of Isaac’s fight, and the obvious benefits to the treatment that the government was now funding, it should have been easy for Jasper’s family to get a quick approval for the same treatment.  After all, our Health Care System is designed to provide Equal Access to All – we’re set up to ensure the best care for all Ontarian’s regardless of age, gender, religious beliefs – regardless of anything.  To bolster the case for providing treatment, ERT is already approved in the United States, the European Union, Australia, and other developed countries!  In fact, treating MPS VI with ERT is the standard of care in these countries.

But on Monday, Jasper’s family got the heartbreaking news that the Government had denied funding for the Life-Sustaining treatment that Jasper needs – the exact same treatment they are currently funding for Isaac.  Jasper’s parents, and our family, were stunned by the news.  How can we allow this disease to ravage Jasper when we know we can stop it?

Thus began our battle anew, and we’ve had to cross our government officials again in order to advocate for the life of a little boy.  As a member of the federal Liberal Party, and as an aspiring Politician, I’ve put myself in the line of fire amongst members of my own party.  After all, it isn’t every day that a die-hard Liberal has to battle his own party in order to enact change.  But if I didn’t work hard on this file, I truly believe I would be doing a disservice to the students I teach each and every day, and I believe I’d be letting my own children down.  During my campaign a few years ago, I talked at length about preserving our Social Safety Net – standing up for those in need, protecting the most vulnerable in our society, and fighting for what I believe in.  Doing the right thing is never easy, and working to save Jasper’s life is the right thing.  Whatever the cost professionally, this is a step I need to take in order to ensure that Jasper gets the same opportunity that my son has had.

But we need your help; we can’t do this alone.  Taking 2 minutes out of your day (every day) can and will go a long way to saving Jasper.  It will also go a long way to ensuring that our Health Care System truly does provide Equal Access To All – you never know when you will require the services supposedly afforded to all Canadians.  By calling Deb Matthews, our Minister of Health, directly, you can allow her to understand how important providing proven Life-Sustaining treatment is to the people of Ontario.  Sending an email to her office and cc’ing Premier Dalton McGuinty will do the same.  Typing out a tweet to their accounts allows word to spread and momentum to pick up in support of Jasper, and commenting on online news articles allows our politicians to realize that this matters to the public.  As well, sharing Jasper’s stories on your Facebook and Google+ feeds allows others to participate and make a difference.

And we CAN make a difference.  Holding our elected officials to account only takes a few minutes a day.  And those few minutes will save the life of Jasper More.

Ironically, as I type away at this blog, my son Isaac and his brother Gabriel are listening to their friend and hero, John Mayer, and singing away to his anthem “Waiting on the World To Change”.  Watching him dance around and sing to his heart’s content, I know that we can’t just sit around and “Wait for the World to Change” – we have to take action NOW and do it ourselves.  Please take the time to help this change by connecting every day with friends and family about this file.  And contact (everyday!) the numbers and twitter accounts below.  Together, we can make a difference.

I’ll sign off this overly long (sorry!) blog update by explaining our Foundation Slogan.  We chose “Love, Laughter, and Hope” because our son gives us the first two each and every day.  But sometimes, all you have left is Hope.  Jasper and his Family need all the hope they can get these days, and I’ll thank you in advance for providing that.

With Love, as always,

The Isaac Foundation

DEB MATTHEWS INFO

Tel: (519) 432-7339, Email: dmatthews.mpp.co@liberal.ola.org , Twitter – @Deb_Matthews

DALTON MCGUINTY INFO - Twitter – @Dalton_McGuinty

Toronto Sun Article - http://www.torontosun.com/2011/08/17/family-lobbies-ontario-to-fund-sick-tots-treatment

Our party and our members have been talking a lot about rejuvenating the Liberal brand since our disastrous results in Election 41.  With this talk, there has also been rumblings of “Generational Change” and the promotion of younger candidates and members as we look the future.  Clearly, I am excited about the opportunity to help us reshape our party and, by extension, our nation.  As I think about what the future holds for us, I thought I would re-post one of my first blog entries, one that I wrote as I was making my first decision to enter the world of politics, as I sat by the grave of the great John Dieffenbaker in Saskatoon and wrote back and forth to Stuart Mclean, a friend of mine and a great Canadian in his own right.  I posted this in May of 2009 and wrote about my passion and excitement to help shape Canada for the better, feelings I continue to hold today.

Enjoy, and don’t forget to leave a comment!

May, 2009

Hey Folks,

I am currently sitting at one of my favourite places in Canada, beside the tombstone of John Diefenbaker, Canada’s 13th Prime Minister.  I first fell in love with this spot at this time last year, when I travelled to Saskatchewan on a class trip with my grade 8 class.  The week had been a long one, and a busy one, and I managed to escape here for lunch and some respite on my final day in town.

I sat here, in the very spot that I am typing from now, and wrote a journal entry to a friend of mine back in Ontario.  He has a radio show on CBC called The Vinyl Cafe.  At the time, entering public life was an idea that had been pulling at me for some time, since before my son Isaac got sick.  I think the atmosphere here inspired me and I just had to put down on paper…er…email what was going through my mind.  Here’s what I wrote…

June, 2008

Dear Stuart,

After a long and arduous week, I have finally arrived at the Diefenbaker centre at the University of Saskatchewan. I had two things that I wanted to see while I was away; the vast expanse of prairie farmland and the final resting place of the enigmatic Chief himself.

Being locked up in paperwork forced me to miss our two-day trip through the countryside and down to Moose Jaw, hence removing the chance for me to see the land that W.O Mitchell so elequently wrote about in his masterpiece, Who Has Seen The Wind. But I was determined to get here today and get a glimpse of the life that was John Diefenbaker.

As I type, I am laying in the grass beside the tombstone and final resting place of the great man himself. A gopher is watching my every move as the prairie sun beats down upon me. Diefenbaker must have selected this resting place for himself, knowing that those visiting his grave would have to look over and about the land he loved so much.

As I aspire for a life in public office, I’m inspired by the man whose grave I’m quietly visiting. I love that I am here and being reminded that he never gave up his dream of serving the people, never lost his drive to fight for what he believed in, and always remembered his roots.

This exchange has brought me a full week in Kingston, where I was able to teach our kids about how incredible John A. was for our city and country. Now I get a true glimpse at what the Chief meant to the people in the West. I see who he fought for; the disadvantaged, the minorities, the real people that have built our great nation, and I’m proud that he is recognized with this museum, and I’m proud that people still stop by here to pay him homage.

I will come back here sometime, in the near future or a long way down the road, if only to keep my inspiration for a life of service in politics at the forefront of my mind.

See you when I see you,

A.

Stuart emailed me back almost immediately, and included a journal entry that he had written from the grave side of Sir John A. MacDonald who was, of course, Canada’s first Prime Minister.  Here’s what HE wrote…

June, 2008

Andrew,

Thanks for the picture. I visited his house in Prince Albert a couple of months ago.  A couple of years ago I  spent a few hours one afternoon by Macdonald’s grave in Kingston, Ontario and wrote a script for the show.

to wit:

I am writing these words in a child’s scribbler sitting under a pine tree that is growing by the gravesite of Sir John A Macdonald. I have come here by train along the same railbed perhaps that he once rode, maybe even gazing at the same fields, the same farms, perhaps the very same trees, on the two hour morning run in from Toronto.

It took less than five minutes and costs less than five dollars to get here by taxi from the train station. And now sitting here with my coat spread on the grass beneath me a spider working its jerky way across my right knee I can hear the whistle of trains as they shunt through the station below me.

This grave that I have meant to visit for years is marked by a simple stone cross, no more than three feet high.  The government sign marks his grave as a Canadian Prime Minister. But the sign also says the grave sight was fixed up in 1982  — which is when the black wrought iron fence was run around it, I decide.

And the stone cross that I have come to see seems too polished to have weathered many Canadian winters. And I am thinking, as I sit here in 2002, 111 years since he died, in a world that is often too shiny for my taste, that I never got the impression he fretted over heavy weather or would be offended by the work of the wind.

I would like to tell him as I sit under this tree and feel the warmth of the June sun on my face, that I was glad to be born in this corner of the world that he coaxed into being. That we are still here and that we know ourselves to be among the lucky.

But mostly I would like to tell him that I travel by train whenever I can, and that he could still travel by train if he wanted; still all the way to the pacific, and on the way over the prairie where

I would like to tell him, if he wanted he might still, if the conductor was feeling good, ride between the cars and throw the top half of the door open so he could stick his head out and feel the wind on his face and count the ducks in the ponds as he went by.

And I would like to tell him that just last weekend I found myself walking by railroad tracks with a young man, a boy still in school who turned to me and said, “I like the smell of trains.” I would like to tell him that.

But mostly I would like to tell him that I wasn’t the only person sitting here on this June afternoon on this pleasant hillside by his grave thinking these things.

– Stuart

Our exchange made me smile and capped off one of those moments in life when things come clearly into perspective.

It felt good to be here then, and it feels good to be here once more.  I hadn’t realized that I would have the opportunity get back here so soon.  It’s another beautiful day on the Prairies, and the “Land of the Living Skies” is truly living up to its name.  To my left, I can see downtown Saskatoon on the horizon, and to my right, nothing but trees and nature.  I am sitting with two friends and we are all just taking in the serenity of this spot beside Dief’s grave.

I am touched by the amount of people that walk by and then stop for a moment of silence at the final resting place of John Diefenbaker.  I watched the first few people stop and then continue along on their walk through the campus.  But I wanted to know why they were here, and from where, so I started to engage them in conversation.  The first man that I spoke with, as I sat in the grass with my laptop, was from Toronto, simply visiting Saskatoon for a few days until he reached Regina and his business meeting.  He had a video camera and a digitial camera with him and he was filming the walk up to Dief’s grave.  He paused for a moment and took in the atmosphere, the warm Prairie sun, and the sound of the wind rushing through the trees.  He seemed almost awe-struck, and told me that he just had to get to this spot before he headed south.

The next group that I talked to was an elderly couple with their two friends.  They came up to visit from the south of the province, almost as far south as the border.  The one gentleman told me that he came here as a student many years ago, when there were only 2500 people registered at the University.  His daughter was a retired professor from Queen’s University in Kingston, Ontario, the city that I’m visiting here from with my grade 8 class.  His daughter would have taught my wife in the Faculty of Nursing, a fact that pleased both him and his wife.

Canada is a small country once you start talking to people.  Don told me that Diefenbaker once came to his father’s house for coffee, simply because his dad had invited him to.  And he told me that Dief would do that often, visit people in their homes, because he was just a regular person, just like everybody else.  As Don stated, “he had his problems too, but that’s also just like everybody else.”

I think this is why I admire Diefenbaker as much as I do.  There are those out there that would object to Dief’s name being printed on this blog site, the blog of a hopeful candidate for the Liberal Party of Canada.  But what made Dief great wasn’t the fact that he was Conservative, nor was it the fact that he was even the Prime Minister.  To me, Dief was great because he worked hard to represent the people that he cared for most; the people that needed it the most.  Dief was a politician for the people, something we don’t see enough of in today’s rough and tumble world of politics.  Dief cared about the “ordinary Canadian”, the people that had struggles but were relentless in their determination to persevere.  Dief was a community politician, and he turned his difficult upbringing into a passion and penchant for helping those who needed guidance.

History has, and always will, allow us to look at our heroes in a different light, away from the glare of public scrutiny, and the pressure to step in line with the status quo.  I hope there will be a day when people can look back at the things that Diefenbaker accomplished for our country and can appreciate that he always had the betterment of the nation as his goal.  Dief looked out for us, and provided countless citizens with a sense of hope for their future without ever asking for anything in return.  THIS should be the everlasting quality that  we seek from our politicians today, for it’s this quality that will help us to grow and evolve as a nation.

Stuart wrote of the people that were sitting at MacDonald’s grave with him and his longing for MacDonald to know that they were there for him.  I too have been touched by the people that have stopped by for a few moments with Dief, a final acknowledgement that he made a difference in our world, and a thank you for giving himself to those who needed it most.

I hope I can give back to my community someday and have the opportunity to work hard to help our country get back to community representation and a government “of the people, by the people, and for the people.”

I’m about to open up Obama’s “Audacity of Hope”, and I can’t think of a better place to read it than here by the graveside of one, John Diefenbaker.

So long from Saskatoon.

A.

It has now been over a week since the political landscape in Canada shifted.  Some argue this landscape shifted to the left, buoyed by the fact that Jack Layton and the NDP orchestrated the (previously) unimaginable by riding the “Orange Crush”directly into Stornaway and into the role of the Official Opposition to the Government of Canada.  Many others would contend that any shift that occurred steered us directly to the right – directly toward a Conservative Majority, directly toward an agenda based on the needs of a select few, and directly toward an ideology that the vast majority of Canadians don’t believe in.

Whether this shift was seismic in terms of a lasting impact on our current political system or a temporary anomaly, only time will tell.  For us to comprehend the results of this election, the dust needs to settle; the wounds need to heal.  It’s too early for us to understand what we as a country have got ourselves into by giving Stephen Harper the majority he’s so ruthlessly plotted out for himself.   It’s too early to tell if the new Opposition can have any real influence in the decisions being made in Ottawa, and it’s too early to tell if they can truly present themselves as a capable opposition.

But for we Liberals, the party responsible for the Modern Canada we have today, it’s not too early for some soul searching, nor is it too early to begin the process of re-imagining our vision of Canada and our place within it.  The resounding defeat of our party at the polls left us with a decimated caucus.  It was the final blow in the long standing boxing match between Liberals and Conservatives – a knock-out punch, to be sure, but a blow delivered by the electorate and not Stephen Harper, something we didn’t see coming.  On May 2nd, people rose up and told us that they wanted something different (and different the got!)

For our party to survive, for us to get up off the mat and into the ring, it’s imperative that we listen to the message delivered to us by the electorate and begin to reshape our vision to meet the needs of all Canadians in our changing society.  We can, and should, be proud of the Canada we helped shape – from championing a progressive social policy, to the introduction of Universal Health Care, the Canada Pension Plan, and the Canada Assistance Plan – to the evolution and vision of creating a just society for all.  Our party is responsible for supporting official multiculturalism, creating the Official Languages Act, and instituting the Charter of Rights and Freedoms.  We boldly paved the way for Same-Sex Marriage.  We fought for the flag we so proudly raise above the Peace Tower and we have, time and time again, stood fast against the growing threat of Separation from Quebec Sovereigntists, battling to keep Canada the strong Confederation we are today.  We created the social safety net our country relies upon to maintain our prosperity, we created the right to be equal and free, and we should be proud.

But recently, we seem to have lost ourselves along the way and lost sight of the Canada we helped to create.  We lost sight of the values we’ve always striven to represent and we lost our connection to Canadians and the world they find themselves living in today.  Suddenly, resting on our laurels won’t be enough to for us to stay relevant, and it’s time for all Liberals to do some soul searching.

The time has come to  rebuild this party from the ground up, which means making drastic changes from the top down.  Our party president, Alfred Apps, needs to step down so we can begin that process with a new National Executive led by someone who cares passionately about our party and who won’t stand in the way of grassroots democracy and party renewal (someone like Ron Hartling comes to mind immediately).  While we’re at it, we need generational change from our leaders and candidates, allowing the young minds of the party to take a stronger role in shaping our future.

At the same time, we need to strive for a vision we can all coalesce around, one that builds upon the grand accomplishments of our party while taking into account the thoughts, ideas, and opinions of the growing population we hope to represent in the future.  We need to go back to the grassroots democracy that helped make our party strong from the very start, and begin to put the big tent that is the Liberal Party back together again.

Being the biggest tent possible, representing ALL Canadians, takes vision, dedication, and a willingness to fight through criticism and troubling times.  It’s never easy.  But our diverse population requires diverse thoughts, ideas, and a broad spectrum of policies.  It requires a broad vision, one created through careful consultation of the grassroots, and one, most importantly, created with the future of Canada in mind.

I look forward to being a part of our future as we grow and change, as I know many dedicated Liberals are.  If we do this right, if we take our time and set our course slowly, we can make a difference again, and Canada will be better for the soul searching we did.