While I write this entry, I’m sitting on a plane heading back home. It’s been a long and stressful week here in Regina, and I’m afraid we’re no closer to getting the help we need for our kids in Saskatchewan.
I started this week with a lot of Hope – we were promised a decision from the Ministry of Health within 7-10 days. It’s a life or death decision, and one that shouldn’t be taken lightly. Last Monday, the Minister of Health, Dustin Duncan, ordered a new review of the kids’ applications, and he promised an expedited review of that decision. Since that time, he’s appeared on television and spoke mis-truths about the drug in question, misleading the public about how well the drug works and who it works best for.
Did the Minister intentionally lie about these things? Only time will tell but personally, I don’t think he did. In truth, I think the Minister was given incorrect information from the Ministry of Health – from the very bureaucrats that we’ve been talking to regarding these kids and this drug for over a year. The information provided to the Minister was that this drug doesn’t work for kids over the age of 5, even though the only data that exists for how well the drug works was collected in children over 5. In fact, of the 29 patients receiving this drug in the country, 27 of them are over the age of 5. It was an error, and one that the Minister went in front of the cameras to repeat.
We put out a Press Release on Thursday to refute the claims the Minster made in public. It was important for us to set the record straight so that the public fully understood the facts that surround this decision. As an advocacy body, it would have been irresponsible of us to do otherwise.
Since that time, we have been hard-pressed to get any information from the Ministry or the Minister of Health about the status of the review, how long the review will take, or when Amir and his family can expect a decision on the future of their children. Every time I called the Ministry for an update, I was told there was nothing new to tell me. The Canadian MPS Society and The Isaac Foundation tried on numerous occasions to get updates and information and each and every time we were presented with the same message “We have nothing new to update.” It was clear they were directed to keep us in the dark.
In an effort to meet directly with the Minister for an explanation, I flew to Regina. I sat through question period each day, reached out to the Minister a few times each day, and politely requested an update on the kids’ files. Our partners at the Canadian MPS Society have been just as ardent in their support of this family, and have also requested updates.
When I arrived at the Legislature on Tuesday, I brought with me a small gift for the Minister – a small card, my blog about Diefenbaker, and a copy of To Kill A Mockingbird. The message I inscribed was short. It read:
Dear Minister Duncan,
I hope we get a chance to connect in person sometime today. In the meantime, I’m leaving you a copy of my favourite book and a blog I wrote a while ago from the grave of John Diefenbacker.
As you know, Mockingbird is a novel about courage, and doing what you know is right, no matter what the cost. It’s how I live my life each and every day, and I hope it gives you a glimpse into why I fight so hard for our kids.
In Mockingbird, Atticus says “Courage is not a man with a gun in his hand. It’s knowing you’re licked before you begin but you begin anyway and you see it through no matter what. You rarely win, but sometimes you do.”Our kids have been fighting battles – large and small – every single day of their lives. This fight for their only Hope shouldn’t be one of them.Warm Regards,
It was a small gesture, but one filled with a message I felt was important to send. It’s a message that hangs on my wall in my office, with the photo you see above. In the end, it was an explanation on WHY we do what we do. Since that time, I’ve not been able to get any news on our kids, and the lack of information for us to share with Amir and his family is disheartening. For the family, it’s cruel and heartless. They go to sleep every night wondering if the next day is the day they will hear news about the future for their kids. As Amir said, “It’s like Night and Night. There is no shining anymore.”
On the way to the airport tonight, I started thinking about Mockingbird, and Atticus, and the message I was sending. As many of you know, it’s my favourite story, and Atticus is someone I try to emulate as I work my own way through fatherhood, adulthood, and through this tough world of rare diseases. I started thinking about what that book means to me, and the beautiful morals the story tries to bestow on its readers.
In reflecting on Mockingbird, I think I may have inscribed my message wrong for the Minister. Instead of Atticus’ wisdom on what true courage is, I should have left him with another quote – the one where the novel takes it’s title from. I should have left him with this:
“Shoot all the blue jays you want, if you can hit ’em, but remember it’s a sin to kill a mockingbird.”
His sister follows by saying “Mockingbirds don’t do one thing but make music for us to enjoy . . . but sing their hearts out for us. That’s why it’s a sin to kill a mockingbird.”
It’s the key quote in the novel and for me it rings true each and every time I have to fight for what is right for our kids.
You see, our beautiful children are just like those Mockingbirds – they don’t do anything except bring us joy. We put everything we have into our children – we see our Hopes in them, our dreams in them. We’d do anything for them, even sacrifice ourselves for their survival. They are the first thing we think of when we wake up, the last thing we think about before we go to bed. For those of us up at night dealing with the rare disease our children are battling, it is them that keep us awake. We live through them, laugh with them, and cry when they are hurting. They are our everything – our joy and our lives. They are, quite simply, our Mockingbirds.
When our kids have to fight for treatment – especially treatments that we KNOW work – it’s like the governments are out hunting Mockingbirds. Once – just once I want these people to step back and hear their song. I want Minister Duncan to truly hear them. And when he does, I want him to take an objective look at the files that are before him – a look free of bias, of dollar signs, free of anger. Because if he does, I know he’ll have the courage to save these kids.
I’ll keep you all up to date as things progress. For now, I’m going to open up MY copy of Mockingbird, and try to enjoy the flight home.