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 of 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 Aleena Sadownyk (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.
3 1/2 year old Aleena Sadownyk was recently diagnosed with an ultra-rare enzyme deficiency called MPS VI. Essentially, Aleena lacks an enzyme in her blood responsible for breaking down cellular waste in her body. This waste then builds up and stores in her 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 catastrophic symptoms, this disease can lead to a shortened stature and a severely shortened life span.
When a child is diagnosed with this disease – and there are only 9 children fighting this 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 9-year old boy who loves to read, play with his toys, play piano, 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 Aleena’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 Canadians regardless of age, gender, religious beliefs – regardless of anything. To bolster the case for providing treatment, ERT is already funded in numerous provinces across Canada, including BC, Saskatchewan, Ontario, and Quebec. As well, 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 a few weeks ago, Aleena’s family got the heartbreaking news that the Alberta Government had denied funding for the Life-Sustaining treatment that Aleena needs – the exact same treatment they are currently funding for Isaac McFadyen in Ontario. And Jasper More in Ontario. And Violet Revet in Saskatchewan. And the list goes on! Aleena’s parents, and our family, were stunned by the news. How can we allow this disease to ravage Aleena when we know we can stop it?
Thus began our battle anew, and we’ve had to cross government officials again in order to advocate for the life of a little girl. As a member of the federal Liberal Party, and as an aspiring Politician, I’ve 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 Aleena’s life is the right thing. Whatever the cost, this is a step we need to take in order to ensure that Aleena gets the same opportunity that my son has had. The same opportunity that Jasper has had…and Violet. The same opportunity all Canadians have – the right to a long and healthy life, with the proper access to our health care system in her time of need.
Over the coming days, we’re going to need help. A decision on the second application to Alberta Health is expected soon. How long? We don’t know because we can’t get an accurate timeline as to when the decision making process will be complete. Essentially, the fate of Aleena is in the hands of a few select bureaucrats who get to say yes or no to funding the life-sustaining treatment Aleena needs. To everyone out there that has supported The Isaac Foundation throughout the years, please stand ready. Ready to help us advocate, ready to make a difference for Aleena. We’ll update more as things progress as to what you can do to help.
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. Aleena and her Family need all the hope they can get these days, and I’ll thank you in advance for providing that.