Stop this train.
I want to get off and go home again.
I can’t take the speed it’s moving in.
I know I can’t
But honestly, won’t someone stop this train.
~ John Mayer
I’m a tired warrior. Exhausted, really. Over the past 10 years, I’ve been alongside Isaac as he fights his disease as bravely as anyone I’ve ever known.
At the same time, we’ve been working relentlessly to find a cure for his condition, and all other types of MPS at the same time. We’ve funded research projects around the world - some that are working out, some that haven’t. We have 3 gene therapy projects running concurrently, one that is imminently headed to clinical trial in humans.
We’ve fought for and brought his million dollar treatment here to Canada, and fought the government to pay for it. Along the way, we’ve fought alongside other families as we’ve looked for equal access to the health care system for them.
We’ve taken on, and won, battles against 3 different governments here in Ontario, two governments in Saskatchewan, two in Alberta, one in New Brunswick. We’ve even taken on the federal government itself.
We’ve never been unsuccessful getting access to treatments for kids suffering from rare diseases in this country. Ever.
I’ve traveled to many different countries and have presented the story of our kids everywhere I’ve been. Last year alone saw me on the road for 220 days fighting for our kids; fighting for our families. I’ve laughed with you all, and cried with you even more.
Each and every time I’m with people, I’m proud to say the I do what I do to honour my son and to honour the promise that I made to him to protect him from the world and keep him safe. I made that promise to him one week before he was diagnosed with MPS, and I felt like an incredible failure immediately. But I’ve been trying to make that up to him since day one, and it’s what pushes me to find a cure for him and all the other kids and families that have to deal with what we deal with every day.
A short while ago, I had an MPS mom remark to me that I don’t share much about Isaac anymore. And she’s right, I don’t. Not because I don’t want to, but because I’m still having a tough time dealing with things. I always will, but I feel like I have to be strong for every other family out there waging this same war.
Which makes what I’m about to share with you that much more difficult. Sadly, I feel like we’re heading right back to where we started because Isaac will need a repeat of his spinal cord decompression surgery ASAP.
For those of you who have been with us since the start, Isaac had this surgery done when he was 20 months old, only a few months after his initial diagnosis. With MPS, the cellular waste that isn’t broken down by the enzymes in his blood end up storing in his bones, tissues, organs, and muscles. Essentially, every part of the body is affected, which is why his expensive treatment is so incredibly important to him.
It gives him the lifeboat he needs until we can find a cure.
Sometimes, patients suffering from MPS will see that buildup occur in the upper neck/spine area and they will need this risky surgery performed at some point in their lives. Usually this takes place later in life, but Isaac’s compression was so severe when he was diagnosed that it needed to be addressed immediately. In fact, it was so severe that his brain stem was compressed and was forming the letter “S” and any slight bump could have had catastrophic consequences. Things were so bad at that time that they needed to take a diamond drill bit and route out a portion of his C-1 vertebrae.
We did the surgery under the careful hands of Dr. Cengiz Karsli and Dr. Rutka at Sick Kids, and both will be looking after things for us again. At the time, we were young parents who were terrified about what was happening to our son, our lives, our family.
And we’re right back to where we started and we’re just as scared. Just as terrified.
Only this time, we’re going into things that much more exhausted.
I’ve hesitated writing this post - we found out the news last Tuesday while at the Neurosurgeon’s appointment in Toronto. I’ve hesitated because I’ve been fighting battles with other families for so long and I feel my role is to be the strong one out there. Someone that parents can come to when they need help or advice. Someone to turn to when they need a bit of Hope.
And I’ve been afraid to share my own vulnerabilities with those very families.
I’ve been finding myself saying the very things that other families and other parents have been saying to me over the past while. “I don’t think I can do this” and “I’m not strong enough to go through this.”
And I’m telling myself exactly what I’ve told you all at some point. “Yes you are. And you can do this, because you have to.”
I’m a Dad too. And I’m coming to realize that we’ve been able to help those families who have been shattered and scared because we know what it’s like to live this life. For 10 years, I’ve laid awake listening to be sure my son is still breathing. For 10 years, I’ve lived with the fear of losing him. For 10 years, we’ve been living in the now because we have no idea what the tomorrow looks like. For 10 years, we’ve been scared.
And so, here we are. Knocked down once again but know we need to get back up off the mat and continue to fight. And we’ll do that, because we have to.
The news last week didn’t change anything for us. It just brought it all back to the forefront and forced us to focus on our own battle once again. And we’ll need everyone we’ve been fighting alongside over the past decade alongside us this time.
And I know you’ll be there.
I’ll update more as we have information. For now, thanks for being along with us through it all.
With Love, A.
Everything always works out in the end. And if it doesn’t, it’s not the end.