After 12 years of weekly infusions, today is the last one. It comes with mixed emotions, Hope, Fear, Worry, Anxiety, and Anticipation to name a few. And Gratitude. Heartfelt gratitude.
When Isaac was diagnosed, we didn’t know what the future would hold. We didn’t know if he’d have a future, let alone how far down the road he’d go. When this treatment was approved, we had to fight to bring it to Canada for Isaac, and then fight to keep it here for him. Along the way, we were lucky to help pave the way for other children in need, and I’m grateful for every experience we’ve had from day 1 until today.
I’m grateful for the children and families we’ve met along the way, and those we’ve been fortunate to help and become part of their lives.
I’m grateful for the support we’ve received, for the people who’ve followed our journey, for those who’ve helped us fund our research to find a cure.
I’m grateful for the few of you who where there on the front lines to help pick us up when we were at our lowest, most heartbreaking of moments, standing beside us as our son
fought so bravely for his life.
And I’m grateful for those of you who are still here, those close friends who know our lives have been difficult, and that we have to disappear from time to time to cope and reconnect. I’m grateful to those of you who get that, who are there when we reappear, even if just to bring us in for a quick glass of wine before we have to disappear for a time again.
Isaac and his hero, John Mayer.
We’re close, everyone. Thank you to you all for helping us raise these funds to get this research to where it is today – finally getting into kids in need, and hopefully providing them with the cure we’ve been searching for. Special thanks to you, Danny Michel, for helping us raise those funds by sharing your beautiful music with us, and for always saying “Yes” when we were in need.
And to you, John Mayer, for simply being a kind, caring, empathetic and compassionate friend to our son, our family, through this all.
This is the end of the beginning of this story of Hope, and we start the next chapter in 2 weeks time.
Isaac with Alberto Auricchio, the researcher who has discovered and created the MPS VI gene therapy.
Just a quick note to let our families, friends, and supporters know that our Annual Gala for a Cure and Rare Disease Symposium, traditionally set to take place in November each year, will have to be postponed. Our new date is April 4-5 for the Patient Symposium and April 6th for our Gala Celebration. I hope you can all join us during that time, because we certainly will have some wonderful news to celebrate together!
We’ve had to postpone our events because our family will be relocating to Italy beginning in October as Isaac has been accepted into the Gene Therapy Clinical Trial!!
So what does this mean exactly?
As many of you know, we have been tirelessly fundraising and supporting this gene therapy project for MPS VI since it’s inception 12 years ago. We’ve been fortunate to have a lot of support during these fundraising drives, and we’ve been lucky to help ensure this project and this research has thrived over that time. This gene therapy project has now moved from the lab to the clinical setting, and Isaac will be the 5th patient in the world, the second to be infused at the highest dose, and the 1st North American to receive gene therapy for MPS VI. We are beyond thankful, excited, and nervous all at the same time.
Isaac fighting for his life in the ICU last year.
It’s been a long journey since Isaac’s diagnosis 12 years ago. Since then, we’ve had to fight to gain access to a life-sustaining treatment for him, watched him endure multiple and very serious surgeries and complications, and sat by him as he fought for his life in the ICU only 1 short year ago. This has been an emotional battle, one that has taken courage, stamina, and a lot of Hope. We’ve stood in the rain at small BBQs, coming away with something like $47 for our efforts, but always $47 closer to finding a cure for our kids. We’ve hosted marathons, golf tournaments, our annual Galas. We’ve travelled the world speaking about our organization, fighting for our son and other kids in need, sharing our story with anyone who would listen, anyone who could help us get closer to our goal.
We’ve had some wonderful help and support. Elizabeth Witmer, the former PC politician in Ontario, helped us gain access to the drug Isaac needed to stay alive long enough to get us close to a cure. Brandy and Roy Halladay were the first to believe in our organization when we were small and simply trying to survive. And John Mayer has been alongside us to provide an escape for our boys every time he’s in town, always treating them both with such love and compassion, allowing them some time to spend with their musical hero. He helped raise awareness of our son, of our cause, and our mission. He helped us get here today.
We’ve also had dedicated physicians and surgeons (Dr. Karsli and Dr. Rutka!), and tremendous care here at Sick Kids’ Hospital (Dr. Raiman and our 4C Nurses!) to help us along the way. We are lucky to have had someone to talk to through it all (Stuart and Jess), and someone who made us a priority in his life to help us raise the money that has helped bring us to this day (Danny Michel!)
This journey has also brought incredible families into our lives and to our organization to fight alongside us as part of The Isaac Foundation.
And you – you’ve all helped us get here for our kids, and we can’t thank you enough.
Through it all, we’ve always believed we would find a cure for our son, and we truly feel that this gene therapy is as close to curative (if not definitively curative) as we will ever get. We are incredibly lucky that Isaac will have access, and we’re thankful to the Italian researchers for allowing us the opportunity to be in this clinical trial.
As we prep for the trial, we’re busy learning Italian, booking accommodations and travel – all from isolation in our home. As many of you know, the treatment that Isaac will receive gets attached to a harmless virus called AAV8. If he comes in contact with that virus (a virus which is highly prevalent in the general population) and develops neutralizing antibodies to that virus before his infusion, his body will fight off the gene therapy infusion, rendering the treatment unsuccessful. We know he is antibody negative for AAV8 now so we are taking all precautions to ensure he does not get this virus before his infusion in November.
Since June, we’ve been living in virtual isolation, ordering our groceries online and having them disinfected before coming into the house. We’ve had no visitors, don’t go visiting places, and are simply spending time with each other, enjoying our wonderful lives, allowing the news to soak in, and celebrating together. Gabriel and I have wandered the golf course together, and we’ve been taking some family journeys to secluded parks and beaches and drive-in movie theatres, as well as hanging out by our own pool at home. Now that we are a few weeks from leaving, we thought it time to share with you all the good news and thank you for the incredible support you’ve provided along the way.
We will update as much as we can as things progress. For now, thanks for being with us throughout this journey, for supporting us through the difficult and the beautiful moments alike. We’re forever grateful for the support we’ve received, for your help in our mission, and for your steadfast belief that we can, and will, work to find a cure for our son.
We’re almost there, and we look forward to packing a full house at our GALA FOR A CURE in April to celebrate, thank each and every one of you in person, and then prep for the next phase – bringing this gene therapy to Canada and the rest of the world for all patients in need.
With Love Always,
The McFadyen Family
Gala Announcement and Some Exciting News to Share August 29th, 2018mcfadyena
Of the millions of moments you live in this beautiful life, you never know what moments are going to remain with you. Often the things that stick are small things, moments you’d never peg as being important or memorable at the moment you’re immersed in them. And then one afternoon twenty years on, or thirty or forty or even fifty years drift past, and you catch yourself daydreaming once again about that Saturday afternoon your father took you with him to the place where he worked.
If you’re the type of person given to wondering about these kind of things, you might wonder what it was about that afternoon that draws you back to it over the years. Or maybe you aren’t that kind of person at all, and you think about it from time to time and then shrug it off, and return to the dishes or the garden or whatever it was that you happened to be doing at the time it tugged you away.
I thought about these beautiful words, written by my dearly missed friend and mentor, Stuart Mclean, a lot over these past few days, ever since I received word that my dear friend – my kindred spirit – Darren More was killed by an intoxicated driver while on his way to work.
Whenever I think about Darren More, the moment I inevitably return to is a sunny summer day at the Toronto Zoo some 7 years ago.
We had just been successful in our fight to get a very expensive life-saving treatment for Darren’s son, Jasper. We worked tirelessly, around the clock, pushing the More family story in the media and within private circles. We used every in and connection we had with the government and the media. We did everything we could – together – to help save his son’s life. And we did it all without ever having met each other in person. We had lots of emails, texts, and telephone conversations but never in person.
Until that sunny summer day at the Zoo in Toronto.
My family sat near the entrance of the Zoo that day, anxiously awaiting the arrival of the More family. We had already developed a strong bond during our fight for Jasper, but there were still so many unknowns that led to those nervous moments of waiting. What kind of people would they be? Would we have anything to talk about? Would our kids get along? Would WE get along? It felt like the moments before a blind date, and Ellen and I desperately hoped we would all hit it off.
In the distance, we saw the Mores walking toward us, and we met them 1/2 way and embraced immediately, all nervousness and anxiety fading away, replaced by an intense and immediate love – a bond that won’t ever be broken, even with his passing. We walked through the zoo together that day, side-by-side, telling stories, sharing our experiences, comparing lives.
And we’ve been walking side-by-side ever since, united with a common and unflagging mission to save our boys, and to help and save other children in need along the way. In those first moments at the Toronto Zoo we became partners, and we left that day knowing we’d do everything we could – together – to find a cure for our kids.
Ellen and I left the Zoo feeling incredibly hopeful, incredibly happy. For the first time since our own son was diagnosed with MPS, we weren’t alone.
When we started The Isaac Foundation, it was because we had felt alone and without Hope. After moping around for a few weeks after Isaac’s diagnosis of MPS VI, we decided that he wasn’t going to get any better with us sitting around and waiting for him to die, and we decided to do something about it. We started our organization to find a cure for him, but to also be a light in the distance for anyone else who was as lost and in the dark as we were during those first few weeks.
It was an ambitious task, to be sure. Find a cure for our son. Easy, right? We were small – just Ellen and I – doing all we could to raise as much money as was possible. We’d attend small BBQ’s at gas stations, at the local RONA store. Anywhere and everywhere. We’d come home smelling like hamburgers and gasoline, proud of the $47 we made that day because it meant we were $47 closer to finding a cure for our son. We worked hard, and we were focused.
But we were still alone, with nobody in this world who truly understood our world or our lives, our hopes and dreams, our everyday trials and struggles, our worries and our fears.
We were still alone. Until that fateful day at the Toronto Zoo. From that point on, everything in our lives changed, both for our family and our organization.
As an organization, I can trace our success and growth back to that very day. Darren and Pam shared our vision and our drive, and they immediately signed on, immediately went to work alongside us. They helped plan events, planned their own events, supported whatever was taking place in our area. They became fundraising powerhouses, quickly helping us double our efforts, which allowed us to start funding more projects in hopes of finding a cure for the boys. One of those projects was a gene therapy idea that looked promising, but far off in the future. Little did we know that our collective efforts would make that project a reality sooner than we thought.
Darren was also always on hand to help me work through advocacy issues for other kids, helping to strategize and gain life-saving access to drug for other kids across our country. He was my sounding board and my voice of reason, and is directly responsible for helping our organization save the lives of other children fighting this disease throughout Canada. I always told industry folks that Darren was my “partner in crime”, and he was.
Darren was honest and sincere, and bold enough to speak up if he disagreed with whatever was going on. He’d often tell me he was going to play Devil’s Advocate. He’d say “I agree with you but I’m going to play Devil’s Advocate here…” to which I’d reply “There’s no such thing as a devil’s advocate if you agree with me Darren!” and he’d proceed to tell me the counter arguments regardless, knowing I needed to hear them, even if I didn’t want to hear them.
We only ever had one real argument. It lasted a day, and it was probably over something stupid. I’m not sure if many of you know, but I’m not exactly the easiest person to work with during stressful and busy times. Darren certainly knew, and he always handled my lack of sleep and intense emotions with his trademark calmness, understanding, and grace. Anyway, we got frosted at each other over something. I was so upset that we were arguing that I couldn’t get any work done for the entire day. I kept checking my texts and emails, hoping it was Darren and hoping we could just forget it all and send each other a virtual hug. I don’t think I’ve ever been as distracted and unproductive as on that day, longing to simply make things right with someone I loved dearly. He told me he was doing the same thing at his work, wasting the day away and hoping we’d simply get things back on track together. And we did get things back on track, we did make things right, thank God.
I’m not unhappy that we argued that day because it reminded me how much I loved and needed Darren in my life, and how important he was to everything we had done and continued to do for kids. Looking back today, it’s ironic that he always called himself the devil’s advocate. In truth, that’s not who he ever was. In truth, he was the little angel on my shoulder guiding me along the proper path, helping to keep me focused on our priorities, reminding me to keep lighting the path for others to find us when they needed us. Even though he’s gone, he’ll forever be that angel, and I promise to stay on that road we paved together, right to the very end.
As I said, everything changed for our family and or organization on that sunny day at the Zoo. His role with our organization has left an indelible mark on the lives of so many, but the impact he had on our family is just as special. For me, he’s always been my kindred spirit. Doing what I do for other families, I’ve always felt the need to project a sense of Hope – of bravery – a sense that things would always work out if only we all held out Hope together. That’s a difficult thing to do when I was going through the same thing these other families are going through with my own son. Hiding my vulnerabilities from other families so as not to add to their fear and stress was, and is, often exhausting. With Darren, I never had to hide my fears. I could always call him and cry. I could tell him I was afraid. I could say I felt like Hope was running out.
And he always understood. Always. And he was always there.
He was there last year as Isaac was fighting for his life in the ICU at Sick Kids’ Hospital in Toronto. I didn’t want to see anyone as I struggled to cope and stay strong. I didn’t realize how much I needed someone until I got a text from Darren asking if I wanted a coffee. I asked him where he was and he told me he was down in the lobby of the hospital, standing outside of Starbucks. He and Pam didn’t know if they’d be able to see me, but they hopped in their car anyway and drove all the way to downtown Toronto, simply to offer me the hug they knew I needed. I broke down the moment I saw Darren, finally allowing myself to be human and grieve, finally allowing myself to feel sorry for the situation we were in. He let me hit rock bottom that day, and then to help me hit the reset button. He was there to pick me back up again and remind me to keep fighting for my son, and I will always remember that drop in visit as one of the most special things anyone has ever done for me.
Through it all, we always talked about the day when the 4 of us – Pam and Ellen, Darren and I – could just sit down and enjoy a drink together, reminiscing about all that we’ve accomplished, revelling in the fact that we had found a cure for our kids. We longed for the day when we could put all of this nonsense behind us and we could just sit and talk together like normal couples do without having the conversation shift to event planning, upcoming galas or golf tournaments or bonspiels. We longed to be proud together – side by side – about curing our kids and wiping out this disease. Although that dream to sit and have that together has been taken away for us, our hope for a cure for our kids hasn’t, and I’m comforted by the fact that Darren knew before he died that we’re almost there for Jasper. We’re almost there for Isaac. And we’re almost there for every other person fighting MPS VI throughout this world.
You see, the research project we’ve been funding throughout these last many years, that gene therapy approach that looked curative but so far away, is finally being infused into patients. Thus far, four patients have received the treatment – a one time infusion – and it looks as close to curative as we’ll ever get. In November, Isaac becomes the fifth patient in the world to be infused, and we have plans to test the rest of the Canadian population for eligibility, also in November, at our patient symposium. At the same time, we’re working diligently to open a trial site here in Canada. While the celebratory drink together will never take place, the hope we’ve been fighting for – the cure for our children – is happening, and that will forever be part of the legacy Darren leaves for us all.
Pam, Ellen, Darren and I have always felt that nobody understood our lives in quite the same way the 4 of us do together. And that doesn’t change today, Pam. We will forever be here for you, Daphne, Clayton and Jasper. We started this journey together, and we’re still beside you, ready to give back everything you and Darren have given us.
As I sit in the sun writing this tribute – one of the hardest things I’ve ever had to write – I’m feeling the warmth of the sun on my skin, the calming sounds of the birds in the trees, and feeling the gentle breeze pass by. Sunny days like today will always bring me back to that day long ago at the Toronto Zoo, when I first met you. That day will always signify the true beginning of this journey together to cure our kids, and the first time Ellen and I didn’t have to feel alone through it all.
I’m grateful for that sunny day, and grateful to have had you in our lives.
Rest in Peace, my friend. You’ll be with me in everything I do…
Hey God I just lost a dear old friend
Hey God I hope he’s in your angel band
Hey God you know he believed in you
Just help me understand why you do the things you do
Hey God send me down some comfort please
Hey God I’ll be down here on my knees
Hey God will we ever comprehend
The forgiveness and grace that lies waiting in the end
Oh there’s anger and tears
For all of the years that your children won’t have you to hold
Oh my heart had been broken
The angels have spoken still I wish I could watch you grow old
Hey God I know he didn’t die alone
Hey God tell my old friend welcome home
Hey God please hear me when I pray
Pray for a little peace ’til we meet again someday
Pray for a little peace ’til we meet again someday
Songwriters: Vincent Grant Gill
Every second we get to share with those we love in this beautiful world are important. Every memory made, every laugh, every tear. Every hand held, every hug given and received. They all matter. In his short 20 years in this world, Lucas knew just that, and he made each and every moment special – for him and for others.
It’s never easy saying goodbye to those of us we hold so dear, but saying goodbye to someone like Lucas Braun seems that much harder, that much more heartbreaking. Sadly, Lucas passed away last night.
I was one of the lucky ones to know Luke and to love him. I was one of the lucky ones who got to learn from him and be guided by his bravery. I was one of the lucky ones who will forever be changed – for the better – by having him in my life. And, like many, I’ll forever be a bit broken with him being gone.
Luke battled MPS with bravery and strength. He battled stoically. He battled hard. He handled every one of those battles with grace and determination, every setback as a new challenge, every painful situation as a necessary road to travel on the way to greater strength. He was in and out of hospital for more surgeries than anyone should have to endure, though always smiling, always brave.
Lucas battled MPS and it was a part of him. But he didn’t let it define him. In my minds eye today, tomorrow, in twenty or thirty years down the road, it won’t be the disease I think about when I remember Luke, it will forever be his grace and dignity, his strength and bravery that comes to mind.
Luke was one of the bravest kids – the bravest people – I’ve ever met. Patient #1 for the Canadian Clinical Trial of Vimizim – the life-saving investigational drug that was being developed for patients battling MPS IV (Morquio Syndrome) – Luke faced the unknown head-on. He bravely put himself in harms way to help test a treatment that had the potential to save many lives, to help slow the progression of the disease in patients, to give them a life-boat until a cure could be found. He bravely faced the unknown to give others a chance; he faced it to provide Hope.
There was a celebration when Vimizim was approved here in this country, but Luke still had his concerns. The drug was approved, in large part due to his sacrifice and his bravery, but it still wouldn’t be available for patients across the country who needed it. When Lucas found out I would be on a crusade to ensure the drug’s availability for those most in need, he told me I needed to be successful because he did the trial to help others, not to watch governments say no to access for everyone. As I fought my battle with governments to gain that access for others, he selflessly told me that “If other patients can’t have the drug, I don’t want it either because I didn’t do this to be selfish, I did it to help everyone.”
Luke was like that – he always thought of others first.
He would often tell me he admired the work I was fortunate to do, and that made me proud. It made me proud because it was he who was the hero, it was he who helped develop this treatment, and it was he who gave hope to all the other patients in the world who were fighting this disease. I fought for all the other kids because of him, and the bravery and sacrifice that he showed, and I fought so that sacrifice wasn’t wasted.
And it wasn’t wasted. Because of Luke, so many kids across the country have Hope. Because of Luke, their lives have been saved. Because of Luke, they can look toward tomorrow.
It will always be Luke’s bravery that I remember. It will be his selflessness.
It will be his eyes – those eyes! – and his smile.
It will be his laughter, his wit, and his humour.
It will be the caring and compassionate way he treated others.
When Luke was facing this recent surgery, he was afraid. But him being afraid didn’t stop him from checking in on my son, Isaac, during his own surgery and recovery, ironically the same surgery Luke was facing a few weeks after Isaac’s. Luke would text to ask how he was doing, he’d post messages of love and support on Facebook. He’d think of Isaac, first, and push aside his own fear.
And his Mom, Debbie, he always put her first. The love he had for her was unending and unconditional. He was proud to be her son, proud to have her by his side during his MPS journey.
As parents raising children battling life-threatening illnesses, we often do everything we can to ease their burden, to find solutions. We scour the internet for news about the disease, we look for alternative treatments and therapies, we hope against hope to alter the path our children are on. Luke often helped ease that burden that only a parent can feel, and he did it often. Once, while he found Debbie again scouring the Internet, he asked her what she was doing. Debbie replied that she was reading about Morquio Syndrome, to which Lucas categorically stated “Don’t try to fix me, Mom. I’m not broken.” It was a quick comment, a small statement telling her how he felt about his disease. But that small statement made Debbie realize that he was right – he wasn’t broken. MPS was a part of Luke, and it didn’t make him broken. Debbie held onto those words throughout Luke’s life, and she recalled them during his final days with us. And those wise words spoken all those years ago by a 5-year-old version of Luke still rang true – Morquio never meant that he was broken.
My favourite story that Debbie often tells me about Luke was when he turned 16. Again, as parents facing what we face for our children and their future, we worry about what any given day, what any given year, can bring. When Isaac was diagnosed, we were told he may not live to see his teenage years. Debbie was told that Luke may not see his 16th birthday. Luke knew this and on the morning of his 16th birthday, he walked into his Mom’s room, woke her up, and said “Good Morning, Mom. I’m still here.”
To me, that’s the most heartbreaking and beautiful statement one could ever hear at the same time. Heartbreaking because he was clearly sharing the same burden as his Mom, but beautiful because he made it and could share that beautiful moment with the person he loved most in this world.
He felt the same about his brother, Zane as well, his ever present partner as they battled MPS together. I know Luke cared deeply about Zane, and saw the strength in Zane that we all saw in him. Zane followed him into the Clinical trial. They fought the disease together. They helped save others – together. The love he felt for Zane was matched only with the love he felt for his sisters, Nicole and Lexi, and the love he had for Jay, his step-father. All of them will be forever changed without Lucas in their lives. But they will forever be better people because of the time they had with him, and because Luke made everyone strive to be better people through the example he set, and the love he gave.
When my friend Justin passed away last year, I wrote a blog in his memory as well. In it I talked about another friend, Stuart Mclean, who used to have a radio program called the Vinyl Cafe. Stuart once wrote a story called Love Never Ends. It’s one of the most beautiful pieces of writing I’ve ever read, and I re-read that story often when I’m struggling with difficult things in life. It’s the story of an older lady coping with the loss of her husband, her life partner and best friend. After his passing, she finds a framed photo of him that he hid for her before he died. On the back is written (from Corinthians 13:7):
Love is patient, and love is kind. Love is not jealous or boastful. It is not arrogant or rude. Love does not insist on it’s own way. It is not irritable or resentful. It does not rejoice in wrong, but rejoices in the right. Love bears all things, believes all things, hopes all things, and most of all, Love never ends.
What I wrote then about Justin and his family hold true for Lucas and his. As much as Lucas was loved, he loved Debbie, Zane, Lexi, Nicole, and Jay just as much. And the love they shared for each other won’t end with his passing. That love will never end.
Every second we get to share with those we love in this beautiful world are important. Every memory made, every laugh, every tear. Every hand held, every hug given and received. They all matter. In his short 20 years in this world, Lucas knew just that, and he made each and every moment special – for him and for others. So as I say goodbye to you, Lucas Braun, someone I was proud to call friend, someone who helped guide what I do, someone I know is a hero in the truest sense of the word, it’s not just your grace and dignity, your strength and determination that I’ll remember. It’s not just your selfless nature, your eyes and your smile that I’ll remember. It’s not just your laughter, your wit, and humour that I’ll remember, nor will it only be the compassion you had for others.
It’s all of it together that I’ll remember, along with the reminder to make every moment count. I know you’ll want that for me, and you’ll especially want that for your Mom, for Jay, and for Zane, Lexi, and Nicole. I know you’ll want us all, along with everyone who was lucky enough to have you in our lives, to love those we love stronger, to hold those who are close to us closer, and to cherish every laugh we get with each other, every tear we shed together, and every memory we share with others. You’ll want us to cherish it all, to slow down and take it all in.
Along with everything else that made you, you, that’s the legacy that you’ve left with us.
Rest in Peace, Lucas. Thank you for all you gave this world.
** Top Photo Credit: Shawn Van Daele
It's Never Easy Saying Goodbye – Lucas Braun, 1997-2017 May 28th, 2017mcfadyena
Today, I popped my head out of my hidey-hole for a little while to do a little bit of work that was important to me. It was tough – I’ve purposely left everything aside for a while as we all huddle together as a family and prep for Isaac’s surgery.
Which is tomorrow.
I purposely let my world stop turning. Perhaps in an attempt to make time stand still – just to give me a bit of time to breathe. Some time to cope. Some time to get ready for tomorrow.
I took part in a webinar with some legislative folks from the US, alongside my colleagues from NYU. I played a small part in our presentation but in the time I had, I wanted to speak up on behalf of the vulnerable patients out there looking for Hope. Lord knows I know how they feel. If I had the time today, I would have walked the people on the call through all that’s taken place in my world over the past few weeks, all while my world had stopped turning. I’d walk them through the fear and anger, desperation and loneliness. The waves of emotion that hit me, that hit my wife alongside me, as we try to come to terms with Tomorrow. But it’s not something I can do – living in a world battling against the odds, battling such a devastating rare disease – isn’t something I can show people. It’s an experience, and in times like these, one I wouldn’t wish on anyone.
It’s true, our journey has given us a unique perspective on life – one of priorities, one of love. First and always. But it’s also given us heartache and heartbreak.
Today, I wish I was able to convey to the legislators on our call how afraid I am at times like these. I wish I could convey the thoughts that run through my mind – thoughts like “is the the last bedtime story I’ll read to my son?” or “are we snuggling up together for the very last time?” Driving to the hospital today, I almost drowned in sorry and worry as I wondered whether we’d all go home together.
Today. I wish today could last forever, because I don’t want tomorrow to come.
Yesterday, I spoke with our neurosurgeon in prep for tomorrow’s surgery. In denial still, I asked if we really had to do this, if we really had to go ahead and see this through. His response was blunt and awakening – either we risk paralysis with the surgery, or we face certain paralysis if we don’t. He aptly put it – we’re in between a rock and a hard place on this, and there is only one way to get out.
Today, I was glad to take some time to do what I love most – standing up for those of you who are facing what we’re facing every day. For those of you who also get hit by the those waves, for those of you afraid. For those of you who only have Hope left to lean on. Hopefully some legislators on the call will have heard my words. And hopefully they’ll make a difference.
After my call, I came upstairs to give my boys a hug, to once again let them know I love them. When I asked Isaac how he was feeling about tomorrow, he bravely said to me something incredible, and something I’ll try to keep in mind always: “I don’t have to worry about tomorrow, Dad, because it’s not today.”
Today, we’re spending the rest of the day together. Isaac’s in the hospital and we’re going to try to spring him for the night before sneaking back tomorrow morning, long before dawn. Today, we’re going to celebrate his 13th birthday in our hotel room, just the four of us doing what we do best – being loving and happy together. Today we’re going to live and try to push our fears aside. Like Isaac says, we can worry about that, tomorrow.
Thanks for all of the notes and messages that have come our way. We’ve received them all, but have take some time away, as I said, to catch our breath. We’ll update as soon as we can. On this Easter Weekend, please keep our boy in your mind.
For Isaac, go out and hug the ones you love. Today. Call someone who means the world to you before that world stops turning. You only get one chance at this, make the most of it.
At night while snuggling with Mom, he’s been asking if there will ever be a surgery that he doesn’t wake up from. Quietly with me, he’s asking how people who are paralyzed from the waist down use the bathroom.
Good lord, I don’t want him to be afraid.
I’ve often said the most difficult thing about this journey has been being forced to see my own son’s mortality each and every day.
I was wrong. The most difficult thing is watching him see it in himself.
It’s heartbreaking. He’s carrying a weight that’s impossible to bear, but he’s doing it bravely and gracefully. And, for the most part, with a smile on his face. That weight, however, has been more evident these past few days, especially during his visit with his hero last night.
As many of you know, Isaac’s mobility has deteriorated rapidly over the past 6 weeks. Last Tuesday, he went in for some more testing and was admitted to the hospital so they could find the root cause of things. In November, he had his second spinal cord decompression surgery, a nerve wracking experience, even knowing he was in the best of hands. Immediately after the surgery, Isaac’s mobility improved greatly – he was walking better, was more loose. Today, however, he can’t walk flat on his feet, his balance is gone, he’s stiff and sore. He’s been waking up numb from the waist down, getting tingling down his legs and inside of his foot. If he raises his arms, he gets a jolt down his leg. During one test last week, he couldn’t tell if the doctor was moving his fingers up or down while his eyes were closed.
And he’s scared.
Hospital results showed that the surgeons need to go back in and do another spinal cord decompression in the same spot, which will hopefully relieve these new symptoms and help him regain his mobility. He’s been fitted for a neck brace, and surgery will take place this Thursday at Sick Kids. He’s in the best hands – Dr. Jim Rutka has been his neurosurgeon since he was a baby. Dr. Cengiz Karsli has done all of his anesthetics. We trust them both fully. Joining both of them will be Dr. Drake, the chief of neurosurgery at Sick Kids, and Dr. Zeller, the chief of orthopaedic surgery. The best will be there to look after him.
Throughout his entire battle, Isaac’s always kept a positive attitude and has been more brave than anyone I know. He still is today, as well. Being fitted for his brace saw him laughing and singing – he was smiling and making us smile through our tears. At the same time, however, he’s grown more afraid of things. More exhausted and tentative. He’s not able to cook with his brace on, and hasn’t updated his website in a few weeks. At night while snuggling with Mom, he’s been asking if there will ever be a surgery that he doesn’t wake up from. Quietly with me, he’s asking how people who are paralyzed from the waist down use the bathroom.
Good lord, I don’t want him to be afraid.
But he is.
We tried to get him out to see his hero, John Mayer last night. John kindly offered to quietly sneak in to the hospital to visit Isaac if it looked like we couldn’t make the show. In retrospect, we probably should have taken him up on his offer – spending a week in the hospital has left him exhausted and drained on top of the stress and worry he’s under. However, we thought heading down to the show would be a good outing for us all, and seeing John would raise his spirits a lot.
And it did. He loved the show (he especially perked up with Shawn Mendes took to the stage with John!) But it was different, too. Isaac wasn’t as talkative during his visit with John as he usually is, or laughing and joking. He had a brave smile on his face, but the exhaustion was noticeable. His discomfort in his brace was clear. Isaac didn’t ask John to play a song (he regretted it after our time with JM was over and tried to text him in time to hear a song, however), and he didn’t want to chat about the new music much. He just wasn’t himself, and hasn’t been of late, which, of course, is completely understandable.
But last night drove it all home for me. This is more real now than it ever has been before. I was already broken, but watching him these past few days has been painful and heartbreaking. I told Ellen how tough that was for me to see, and how tough it was for me to see people posting photos of their last time together compared to this one. Last visit was all laughs and giggles, free spirited and stress free. Ellen said she knows people like John will understand and that it makes this experience almost as real for those around us as it is for us. I know his classmates understand. I know his teacher understands, too. And it will make them face that this is tough, but also allow them to celebrate with us once this is over and he’s back on the way to better health. And Ellen’s right (she always is!)
Driving home today, Isaac told me he just wants this all to be behind him. He doesn’t want to visit his classmates until this is all over, until he’s feeling better again. He can’t wait for Thursday and is heading into that surgery with all the grace and determination one could ever hope for. He’ll get there – we’ll all get there.
We have to.
Thanks, as always, for dropping in on our update.
We’ll update after surgery on Thursday.
P.S. – We rolled back into home an hour ago. Isaac’s playing some Minecraft and we’re going to snuggle up and watch a movie together this afternoon. Before he settled into his gaming, he did take some time to look at his brand new guitar that John gave to him as a gift. He gave one to both Isaac and Gabriel, each signed with a special message – both meaningful and sweet. Isaac loves his, and he perked up a bit last night as he opened it and pretended to play a quick song, and again as he checked things over today, telling me how much he loves it and how wonderful it is. It was a thoughtful gesture, one that again shows how lovely John really is – we should be bringing him gifts rather than the other way around. I’ll write about this and his message for Gabriel sometime soon. For now, our energy is in getting to and through Thursday.
Of the millions of moments you live in this beautiful life, you never know what moments are going to remain with you. Often the things that stick are small things, moments you’d never peg as being important or memorable at the moment you’re immersed in them. And then one afternoon twenty years on, or thirty or forty or even fifty years drift past, and you catch yourself daydreaming once again about the Saturday afternoon your father took you with him to the place where he worked. ~ Stuart Mclean, Love Never Ends
Stuart wrote these words many years ago, and they capture perfectly what I’ve been experiencing since his passing one week ago. Everything reminds me of our time together – smells, moments, sounds, photos. His voice, those kind eyes.
His death hit me hard, and it hurts more than I ever would have expected it to. As the country mourns the loss of someone who spent every Sunday afternoon in their homes and on the radio, as Canadians come to terms with the fact that he’s gone, I’ve been quietly remembering and saying goodbye to someone I grew to admire and love, someone I turned to when most in need, and someone who helped lead me through the darkest moments of my life.
I was out of the country when news broke of Stuart’s death, news that made it feel like everything was crashing down around me. Ellen was away with me, and I was glad to have her there to share in our private grief, for Stuart meant almost as much to her as he did to me. I was glad not to be in Canada during that time and the days afterward – I didn’t want to hear tributes on the radio, I didn’t want to see his face in the news. I simply wanted to have him and my memories of the times I spent with him to my own – I wanted to remember Stuart the person rather than see tributes to Stuart the celebrity.
Stuart was someone I turned to often when I needed someone the most, especially during the early days of Isaac’s diagnosis. It was Stuart who reached out to us first when Isaac landed on the front page of The Globe and Mail, our national newspaper in Canada. I opened my email to note from him that read “It occurs to me that you’ll need a place to hang your hat when you come into Toronto (for Isaac’s many appointments). I’ve made you a key to my place, come and go as you need.”
Ellen and I were young kids at the time, coming to grips with the devastating diagnosis of our son that would change our lives forever. We’d almost never been in the big city, and we were struggling to make ends meet at home, as most young couples do who are just starting out on their own. Stuart’s offer was kind and sincere, and it saved us stress and money at a time when stress was plentiful and money was not. When we stayed with him, he cleared out of his master bedroom and moved into the smaller guest room, sacrificing his space to make sure we were most comfortable. He was like that – selfless to a fault, always, to anyone in need.
In the years since those early days, Stuart’s always has been here to talk with, to provide advice, and to help guide my way. I’ll always remember calling him from the hospital one evening after getting some concerning results from the specialists about Isaac’s spine. It was late one evening and they wanted us close so they could confer with more specialists in the morning. I called Stuart, clearly upset, and he told us to travel down to his place – a new home he’d purchased and one we hadn’t spent much time at yet. We arrived late in the evening – near midnight – and put Isaac to bed up in the guest bedroom. Stuart had ordered us some Thai food, poured us some red wine, and spent the night talking with us, letting us know all would be well, and being the friend we all would need during some difficult moments. It was spur of the moment, but he dropped whatever he had on to make this happen for us. We left the next day feeling lighter, feeling better, and ready to get back in the trenches for our son.
I have countless moments like this that I could share with the world. My most memorable – and by far the moment that changed my course and my mission to find a cure for my son – came in Belleville, Ontario. We’d just got some bad news about Isaac that I was having trouble coping with, and Stuart happened to be close by doing a show in Belleville. I dropped over to visit with him to seek his advice and to simply talk to someone about how devastated we were. After the show, we sat together. He listened patiently (though the bus was long since ready to depart with everyone on board) while I told him what new challenge we were faced with. When all was said and done, he simply told me that everything was going to be ok. Very matter of factly, he said “Everything always works out in the end. And if it doesn’t, then it’s not the end.” I’ve lived each day since with that as my mantra, and I’ve shared it with the many patients and families I’ve visited throughout the years. It’s a message I live by and come back to when things are tough. Everything will work out in the end – I truly believe that now – and I’ll never forget that wisdom he gave me when I needed it most.
He taught me big things. Small things. Things I’ll remember forever.
Anyway. He taught me anyway. Not anyways! I was leaving his house one day and transitioned with “Anyways, I better get going.” He followed me out to my car and said “It’s anyway, not anyways. If I’m going to mentor you, we’re going to start with ANYWAY. Gzowski did the same thing to me long ago, but he did it on live radio for everyone to hear!”
He taught me to teach my students about the beauty of a story, not the symbolism or imagery. When he agreed to let me do The Educator’s Guide to the Vinyl Cafe, he said just that “Yes. Do it. But don’t talk about symbolism or imagery. We can’t do this if that’s the focus.” I took that with me into the classroom, and made it the focus of the novels I read my kids – Black Like Me, To Kill a Mockingbird, A Separate Peace. We talked story, we talked message. We talked how beautiful each piece was, and left the imagery and symbolism for others.
Isaac and Gabriel’s Christmas Message to Stuart and Jess – December, 2006.
My god, how dearly I’ll miss him.
I’ll miss his kind eyes, his calm demeanour. I’ll miss the laughter and the sound of his voice. I’ll miss the lessons he taught me, and the example he set for me to do better and to be better. I’ll miss how much he believed in me, how much he supported our mission, and how he steadfastly believed we’d see that mission through.
I’ll miss the messages he’d send telling me what he was listening to at the time. “Listening to Cripple Creek by the Band” or whatever was playing at home while he was emailing. I’ll miss him messaging from a yoga retreat when he was supposed to have left technology at home.
I’ll miss all the things he taught us. When talking with Ellen about all of those lessons, her favourite was that it was OK to swear in front of the kids. Which he did. Often.
I’ll miss his kindness. He’d send books to my friends who were going through challenges – a full signed set and some CD’s to a friend’s father who was in the hospital and battling cancer, whomever was in need, so long as it would be helpful. When I told him about one of my students who lost his mother to cancer and needed a bit of a boost, he not only met with him but took him out on the road for a few weeks to help sell merchandise on the tour. Stuart didn’t need the help, and I’m sure he didn’t need to look after a 14 year old kid on the road. But he knew the kid needed someone, needed some guidance, and he looked after being that person.
I’ll miss talking to him via email, long conversations that last the day – with one or two lines being exchanged and sent back and forth for hours. One of those times was when I was talking about my father, and how I thought he was now living in a van in BC, homeless (and for all I knew, struggling). Back and forth we emailed, him asking questions, me filling in the empty pictures in his mind about it all. He took that day and talked about it on his radio show, as he did occasionally about things we shared together.
We talked via email about God, and about someone watching over us (or not), when another one of my student’s Mom passed away – again from Cancer. We talked big ideas, small ideas. Silly ideas. Repeat.
We talked Dief and Sir John A. McDonald one day. I took that back and forth and included it in a blog entry that you can read HERE:
For all he gave to me, I tried to give back to him. It was Stuart I emailed each father’s day to send my love and thank him for being someone in my life when I needed someone most. I didn’t have a father figure in my life growing up, and I saw him as someone I could rely on in times of need. I’m glad I told him what he meant to me. I told him again via email the day before he passed away – I was on a plane to San Diego and had some urge to simply let him know, once again, how much he meant to my family and me.
My favourite memory of Stuart will always be the time that Ellen and I put a garden in at home for him as a surprise – we turned over the soil, planted it entirely, and waited for him to come home from his tour. He loved it, and sent a lovely card to let us know how much he loved watching the birds come and go, how much he loved his new garden. He sent another one a few weeks later letting us know how the garden was still lovely, but how it’s led him to develop a obsessive hatred of squirrels!
In that garden, I planted a batch of Trillium, our provincial wildflower, and one I told him I wasn’t sure I was allowed to dig up or transplant. I was sure it was against the law. I told him to keep it quiet, which he promptly turned around and announced on the radio. I laughed when I heard this – knowing the flower police weren’t soon to turn up on my doorstep to take me in for transplanting wildflowers to his garden.
When I transplanted those Trillium, I brought a batch back to my own garden as well. When they come up each spring, I think about how happy they made Stuart during those early days of his garden but also how happy they make me each and every spring.
The Trillium is the harbinger of spring, the beginning anew, the nod to rebirth and regrowth. The Trillium symbolizes purity, beauty, and recovery. And for me, it will always mean something more. When my Trillium break through the soil in the Spring, they will always lead me back to Stuart, to his love and friendship, to the example he set for others, to the kindness he showed to all.
Thank you for your love and kindness, Stuart. Thanks for your guidance, patience, and everlasting hope you gave to our family. Thanks for pushing me to be a better me, simply by being you. You’ll forever be missed in our lives, but always remembered and honoured in all we do.
Andrew, Ellen, Isaac, and Gabe
To Stuart, With Love… February 21st, 2017mcfadyena
Isaac had another good day today! He sat up a few times, was able to raise his head for a very short amount of time, and even stood (with assistance) for about 30 seconds! We are hopeful to stand for a bit longer tomorrow and maybe, just maybe, take a step or two! He is a long way from dancing at our GALA FOR A CURE next weekend, but he’s making progress and we’re thankful for every little inch we make forward.
A children’s hospital is a tough place to be in on the best of days. But on evenings and weekends, it’s downright sad and awful. Sound echoes through the empty halls, and the people who remain in the mostly deserted building are here for the most heartbreaking of reasons. We are some of lucky ones – we know that Isaac will be home soon, out and able to fight his disease for another day. But many kids in here won’t ever be leaving, and it really puts everything into its proper perspective.
Don’t worry about the small things – most things we get upset about pale in comparison to the fight the kids in here face every day. To highlight this, a stat call was just made on our floor for neurology, followed by a code blue. Worst of the worst. Some little one is suffering, some parent hurting. It shouldn’t ever be like this for our kids.
Please Keep things in #perspective. The last decade I’ve spent with Isaac at Sick Kids has taught me to do just that.
Forget the small things, the little annoyances, the petty problems. Cherish the time you have with those you love. And tell them as much. Go out more, do more, live more. Give your kids an extra long hug tonight, give them an extra kiss.
Thanks for being here, as always, and helping us along the way. Oh – yes, we are reading a book called “No Girls Allowed!” – it’s why Mom isn’t in the photo 😈
An Update, and Some Perspective November 6th, 2016mcfadyena
“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.” ~ Atticus Finch, To Kill A Mockingbird
Last year, I spent 220 days on the road. It looks like I’ll easily top 150 this year as well. Our quest to find a cure for our kids has taken us across Canada, the United States, and around the world. It recently landed us in DC to testify in front of the United States Senate Congressional Hearing on Right to Try legislation. It’s been a long and arduous road, indeed, but one filled with love, warmth, and Hope. It’s a road I wouldn’t trade for any other path, because we’re out there living up to the promise we made to Isaac long ago – a promise to help whomever we could, however we could, in his name and in his honour.
Wherever I go, I’m often asked what I do. During a lunch meeting yesterday, I described my role like this: I look at our kids from above – from an aerial perspective – and see them racing in a pack toward the edge of a cliff. Some kids are running way ahead, to fast to see what’s coming. It’s my job to find the kids closing in on the edge, the ones most in danger of hurtling over, and desperately try to pick them up and place them at the back of that ever-moving pack. It’s my role to try to give them time until we can get a bridge completed to take them safely to the other side.
But sometimes – just sometimes – I forget that my son is in that same pack, racing toward the same cliff’s edge.
That harsh realization hurts, and comes crashing home at the most unexpected of moments, much like it did in April when we found out about Isaac’s spinal cord, and much like it did in the run up to today’s surgery.
In April, I wrote that I sometimes felt alone, and that I couldn’t share my vulnerabilities because we’re supposed to out there spreading Hope. Sitting in the OR waiting room today – a room filled with stale air, worried parents, and endless fear – I reflected on all that we’ve been through over the past 10 years fighting this disease. I thought about all the times I’ve stared at the doorway in that waiting room, anxiously waiting for our doctor to come in and tell us that our son was OK. I reflected on where we’ve been, and the toll that journey has taken.
I thought about the perspective we’ve gain through all of this. A perspective that sees the beauty in life; in everything. A perspective that sees us living in the now and not worrying about the later.
Sitting in the room today, I remembered, once more, where we’re going. I had the chance to sit down and read all the notes, texts, and emails wishing Isaac well. We felt your love, and know you’re all there beside us. We’re lucky to have built a community up around us to help along the way. Together, we’re going to get that bridge built, and we’re going to get our kids to the other side, safe, sound, and healthy. A bridge strong enough and big enough for all of our kids in need. And we’re so very close…
Thanks for your love and support today. Thanks for being alongside us through it all. We made it through this battle today. With luck, we’ll get Isaac on his feet in time for the Gala on the 12th. Looking forward to seeing many of you there.
Toward the Cliff’s Edge… November 3rd, 2016mcfadyena
I’ve procrastinated on this post for a whole host of reasons, but mostly because it’s been difficult to process, collect my thoughts, and share them with you.
Sadly, Justin Van Herrewegen, someone I’ve admired for a long time, passed away peacefully this past Friday. Justin was 34 years old and fought a courageous battle with MPS VI. He was dearly loved by his parents Debi and Paul. He always had his best friend and sister Ashlee by his side, and all three were with Justin on Friday when he finally succumbed to his disease.
Justin meant the world to me – I saw him in many different lights at the same time, for obvious reasons. All at once, I saw Justin as a son, a mentor, a friend. Someone I could look to for his bravery, for the example he set. Someone who showed me that it’s possible for someone battling such a savage and relentless disease to lead a full life. Someone who gave me Hope, always.
And every time I looked at Justin, I saw my Isaac (and if I ever forgot to notice, Facebook always asks me to tag photos of Isaac, and suggests Justin as the person I should tag 🙂
I met Justin soon after Isaac was diagnosed, and we travelled out to see him at a coffee shop near his home. I was heartened as he showed me his car – his pride and joy – and relieved when he told me he could drive without issues. I took in everything he told me during that visit, and always looked to him as an example of what was possible.
Justin had a million friends. He could do almost everything by himself. If things weren’t going well fighting MPS, he took the disease head on with bravery and smile on his face. And he moved forward. He always moved forward.
The most incredible thing for me? He did all of this without access to treatment for his entire life. He fought a brave battle with MPS before treatment was available. And he lived his life courageously, fully, and with pride.
This is why Justin always gave me Hope. Hope for the future of my son. Hope for the future of all of our kids. And I’m going to miss him dearly.
I was fortunate to spend more time with Justin over the past year. I always enjoyed our talks, enjoyed seeing him. And marvelled at his bravery each and every time.
At our Gala this year, Justin was very ill in the days leading up to the event. But he surprised us by arriving with Ashlee, and stayed the entire night. For those of you who know me well, I always try to take a moment to have a glass of whiskey with those who are closest to me. Justin hadn’t had a drink in over 3 years, but he agreed to break his streak to have a nice glass with myself and his sister. We gulped it down like old friends, and the smile on both of our faces grew wide. It’s that smile that I’ll remember forever, along with his ability to make those around him smile alongside him.
A car fanatic, I dropped over to Justin’s house to take him for a ride in my Tesla. We went in his car first, for what I thought would be a nice drive around the block. Not so! Justin punched the gas pedal and we got going – FAST! Faster than I’ve ever driven before. I looked over at Justin and he had a huge grin on his face. I knew he was in control so I just enjoyed our time ripping through the back roads of Bowmanville! We swapped into the Tesla when we got back to his house, and I let him drive that too. And we went Fast. No FASTER than the first time.
He looked at my pale face and laughed and laughed. We shot a photo together that day, and I’m going to have it printed to hang on the wall of my office this week.
I know a lot of Justin’s friends have been hurting over the past few days, but none so much as his parents and his sister.
Both Justin and Ashlee have told me on numerous occasions how incredible their parents have been over the entirety of Justin’s battle with MPS. Always by his side. Always available when in need. And always there with love, care, and compassion. As the father of a child fighting the same disease, I know that Debi and Paul are living their worst fear, and going through their worst moments together. Along with Justin, I’ve been thinking about Paul and Debi during the past week, during my the many sleepless nights I’ve spent processing his passing.
And Ashlee. I’ve been thinking about Ashlee a lot. She’s been with Justin through this all, and has been the sister and best friend that any of us can only hope for in this life. When I visited Justin in the hospital earlier this year, I walked in to see Ashlee massaging Justin’s legs, something which she had been doing for most of the night. Justin’s heart wasn’t functioning well and his legs had swollen up. He was in pain and couldn’t sleep. Only with Ashlee working to increase the blood flow in his legs was he able to get some sleep. And she did that whenever he needed it, even if it meant staying up all night. And she did – often. She brought a cot into the hospital room and spent every moment with Justin.
She sacrificed whatever she needed in order to help Justin however she could. She tried to take whatever burden away from her brother, no matter what the cost was to her.
I’ve seen my own son Gabriel in Ashlee. Both fiercely protective of their best friends. Both empathetic. Both overflowing with love. And both the type of people we should all wish our children turn out to be.
My friend Stuart Mclean over at the Vinyl Cafe wrote a story called Love Never Ends. It’s one of the most beautiful pieces of writing I’ve ever read, and I re-read that story often when I’m struggling with difficult things in life. It’s the story of an older lady coping with the loss of her husband, he life partner and best friend. After his passing, she finds a framed photo of him that he hid for her before he died. On the back is written (from Corinthians 13:7):
Love is patient, and love is kind. Love is not jealous or boastful. It is not arrogant or rude. Love does not insist on it’s own way. It is not irritable or resentful. It does not rejoice in wrong, but rejoices in the right. Love bears all things, believes all things, hopes all things, and most of all, Love never ends.
As much as Justin was loved, he loved Ashlee, Debi, and Paul just as much. And the love they shared for each other won’t end with his passing. That love will never end.
I’m a better person from having known Justin. Stronger and filled with more Hope. I’ll take that strength with me and I’ll keep Justin with me as I continue my mission. Most importantly, I’ll work extra hard to honour his battle in the best way that I can – by finding a cure.
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.
Everything always works out in the end. And if it doesn’t, it’s not the end.
Stop This Train – An Update On Isaac April 27th, 2016mcfadyena