Someday We'll Find It...

"Someday we'll find it, the Rainbow Connection - The Lovers, The Dreamers, and Me."

So go the lyrics to a beautiful song written to inspire hope when hope is all you have left to dream for. I grew up listening to this song and fell asleep listening to it on countless nights. It was part of Kenny Loggins' "Return To Pooh Corner" album, a mix of children's songs he put together many years ago, although the song originated elsewhere.

When my kids were babies, I spent a lot of time singing this song to them as they drifted off to sleep in my arms, some of the most precious moments I've ever had in my life, and memories I'll cherish for as long as I live.

This evening, I found myself listening to that song once again, but this time I had tears streaming down my face as I snuggled up with Isaac. We were in the movie theatre and, of all people, Kermit the Frog was singing away to "Rainbow Connection" on the big screen in front of us. Isaac was weeping because it was a sad part in the movie (he's always been an emotional soul), and I was weeping because of the news we received yesterday regarding Isaac's health.

For the past year and a half, we've been thrilled by the fact that things with Isaac have stabilized - for the first time we finally felt like the symptoms of his disease had stopped progressing - we'd halted things where they were. On Friday, all of that came crashing down on us as we got word from Isaac's cardiologist that his heart has become enlarged again. We've been through this before - Isaac's been on heart medication to stop his heart from getting enlarged for a number of years. Up until this point, the medication has worked. In fact, over the course of the past few years, his heart has shrunk down to it's normal size again. But yesterdays news was earth shattering for us. For some reason - the meds are no longer working and his heart is now 25% enlarged again, and we don't know why.

We've been told that it could be due to valve leaks - we hope this is the case. In fact, this is the best case scenario at this point and, for the time being, we've switched his heart medication to another type in an attempt to stop the heart from becoming enlarged. We hope and pray that this will work because the other reason for the enlargement is so much worse - cardiomyopathy or, essentially, the beginnings of heart disease/heart failure. Facing your own mortality is scary; facing the mortality of one you love is devastating.

For the first time in a long time, I'm scared again - devastated - and I feel like I have the weight of the world on my shoulders. And I feel helpless. Helpless because I don't know what I can do to make this better for Isaac; I don't know how to save my little boy.

For now, we're going to redouble our efforts with The Isaac Foundation and work as hard as we ever have in order to find a cure for Isaac. Our research project that we're currently funding has been shown to get into the hearts of those effected - could this be the hope we need? Is there another project ready to be started that can help Isaac's heart? All we have are these questions, but it's a place to start.

It may not help but please take a moment to send this blog on to anyone you know - you never know who's reading and can help out. You never know what might be. I've always been a dreamer - maybe this entry will find it's way to a million people. And maybe each person will find it in them to send our Charity 1 dollar. Research projects cost a lot of money, and maybe that money is all that stands in the way of us saving our little Isaac. It seems like a big dream, but it's all I've got right now.

If you can't send this along, please take a moment to keep Isaac in your thoughts. The support we get from around the world has been, and continues to be helpful, and we could use the extra thoughts right now.

I'll update when I know more - hopefully with good news. For now, back to the grind raising money and awareness about this devastating disease; back to finding a cure for our son. Someday we'll find it - the Lovers, The Dreamers, and Me.

With Love,

A.

The Heart of Life

Hi All,

Isaac's First Concert Performance. I thought I'd share with all of our supporters so that you can see the Hope and joy he brings to us each and every day.

Enjoy, with Love,

The Isaac Foundation

How To Save A Life - Don't "Wait On The World To Change"

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 betterplace; I want them to understand that they CAN make a difference in the greater world around them. I want them to knowthe importance of helping others.

There are many ways that teachers help guide their students along thepath 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) shouldbe 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 organsbegin 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.
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.

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.

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