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It's Never Easy Saying Goodbye – Lucas Braun, 1997-2017

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.

IMG_8493It’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.

17202897_1275005402583731_7948283153381030130_nThere 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.

IMG_8405He 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.

With Love,

A.

** Top Photo Credit: Shawn Van Daele

Today

17632086_10158386313365291_3818980000710984532_oToday, 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.

Today.

And Everyday.

With lots of Love, and with thanks,

A.

War of My Life…

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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.

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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.

f9068d1a05a011e3b96f22000aeb0cca_7But 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.

With Love,

A.

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.

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To Stuart, With Love…

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.

15542279_10157857011350291_7486116309729558078_nIn 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.

With Love,

Andrew, Ellen, Isaac, and Gabe

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An Update, and Some Perspective

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 😈

Toward the Cliff’s Edge…

“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.

With Love,
A.

Love Never Ends

Hi Everyone,

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.

Screen Shot 2016-07-07 at 12.27.02 PMAnd 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.

Isaac-and-JustinI 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.

13580666_10157052506490291_3406877496346988526_oBoth 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.

Sending my love to you Ashlee, Debi, and Paul.

Rest in Peace, Justin.

*** Justin’s obituary can be read here.

 

Vimizim Compassionate Use Update

Some exciting news to share – The Isaac Foundation spent the entire month of June ensuring continued access to Vimizim for our Canadian Clinical Trial patients suffering from Morquio A Syndrome.
 
The compassionate use program, which saw all patients who participated in the Vimizim clinical trial receive access to therapy for a certain period of time, was set to end on June 30, 2016. This would have resulted in the remaining 11 patients losing access to their much needed treatment until it was fully reimbursed by the government.
 
Working collaboratively with the Ministry of Health in Ontario and with Biomarin pharmaceuticals, I’m thrilled to report that we’ve been able to ensure access to treatment for all 11 patients until Biomarin and Canadian Provinces (pCPA) can negotiate terms and conditions for coverage for all patients.  Both Biomarin and the government did fantastic work on this, and we’re thrilled with the outcome.
 
We will continue to do everything we can to help patients and their families receive the best care possible as they battle this and other ultra-rare diseases. Thanks to everyone for supporting us and helping along the way.
 
#Hope, always…

Stop This Train – An Update On Isaac

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

Hey Everyone,

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.

~Stuart Mclean

Foundation-Poster

LOCAL CHARITY CELEBRATES 10 YEAR ANNIVERSARY

THE ISAAC FOUNDATION CONTINUES TO MAKE SIGNIFICANT GAINS IN SEARCH FOR CURE FOR MPS DISEASES WORLDWIDE

On February 21, 2016, The Isaac Foundation will be celebrating its 10th anniversary. The Campbellford, Ontario charity was started to fund research aimed at finding a cure for MPS VI, a rare, progressive, and devastating disease that a local child Isaac McFadyen was diagnosed with in 2005. Since that time, The Isaac Foundation has donated close to $1 million to research projects, with $175,000 being donated in the last year alone. The charity has grown considerably and supports children and families throughout Canada and around the world as they cope with the new reality a diagnosis of MPS brings.

“We’re incredibly proud of the things we’ve been able to accomplish over the past decade,” said Andrew McFadyen, Executive Director of The Isaac Foundation. “Obviously, finding a cure is paramount for us and that drive and focus to help these children will never diminish. But we’re also lucky to have helped children across the country receive the life-saving treatments they desperately need while we search for that cure.”

The Isaac Foundation has funded research projects located in Australia, the United States, and Italy, projects that have led to advances in the treatment and outlook of MPS. “We’ve had some hits and some misses over the years, but we’ve been fortunate to play a role in two exciting projects going to clinical trial. That in itself is incredible, but the fact that these projects will have a direct impact on improving the quality of life for patients suffering from MPS is still unbelievable to us. If you asked us 10 years ago if we thought this is where our organization would be, I don’t think we could have hoped for much more.”

One of the projects The Isaac Foundation helped start is a gene therapy approach to treating MPS VI. The project goes into human clinical trials in 2016 and could prove to be a cure for MPS VI, the form of the disease that young Isaac McFadyen suffers from. “We’ve been very careful not to throw around the word ‘cure’ with respect to this research, but we firmly believe that it will prove to be the answer we’ve been looking for all of these years. We’re lucky to have been involved since the very beginning, and we’ve been directing most of our research funds to this project for some time now. If the trials run as well as we expect it will, it won’t be long until we see the hard work behind this research come to market for our kids and patients. It’s incredibly exciting.”

The organization also has been administering a fund for MPS II research for the past number of years and has 3 gene therapy projects for MPS II underway. Last month, the fund provided another $62,000 grant to one of those gene therapy projects, research that looks very promising and is moving at a rapid pace.

“When we started The Isaac Foundation, we wanted to ensure that money that came into our organization was turned around quickly and sent back out to researchers as soon as possible. We also wanted to ensure we were responsible with the funds people donated and we’re proud to note that almost 99% of all money donated goes directly to our charitable program aimed at finding a cure for MPS. Last year, we hit the 100% mark and we expect to do the same this year. There aren’t many charities in this country that can meet those goals it’s means a lot to us that we can.”

With respect to advocacy and patient support, the organization has helped pave the way for patients across Canada to receive life-prolonging enzyme replacement treatments as the search for a cure continues. “These are incredibly expensive treatments, sometimes upwards of $1 million dollars per year, per patient. But the impact treatment has on the lives of patients is dramatic, and a price should never be placed on the life of a child. The help we’ve been able to provide these families suffering from MPS II, IVA, and VI is probably something that I’m most proud of in my life.”

The organization has garnered the attention and support of many big names throughout its 10-year history, from International music star John Mayer, to retired MLB star Roy Halladay, to Canadian icons The Tragically Hip, Ron Sexsmith, Sarah Harmer, and Danny Michel.

To celebrate their anniversary, Canadian graphic artist Andrew Kolb (www.kolbisneat.com) designed artwork that sought to capture the essence of The Isaac Foundation in one piece. The work features a smiling sun rising over a map tracing a long and winding route. At the end of the route is a large ‘X’ and the tag line “Hope Is Here”. On the horizon, kids and adults rush toward each other to join hands. One of the kids is in a wheelchair.

“It’s beautiful,” says McFadyen. “It sums up perfectly what we’ve been about and where we are going. Hope definitely is here, and I’m glad we’ve arrived there together with all the families we’ve been fortunate to help along the way.”

# # #

The 10th Anniversary artwork can be viewed online at http://www.theisaacfoundation.com/anniversary.jpg

For more information about this topic, or to schedule an interview with Andrew McFadyen, please call Andrew at 613-328-9136 or email Andrew at mcfadyena@me.com.

10thAnniversaryPoster_Web

MINISTER ORDERS REVIEW OF DECISION TO DENY LIFE-SAVING DRUG

Treatment Required Immediately For Ailing New Brunswick Boy; Family Elated With News

“It doesn’t feel real.  We have hope again for our son.” – Carolle Mazzerole, Morgan’s Mom

The Minister of Health in New Brunswick has ordered a full review of his recent decision to deny access to a life-saving medication to 10-year-old Morgan Doucet.  Morgan suffers from MPS IVA (Morquio Syndrome) and requires the life-saving treatment immediately in order to halt further progression of his devastating disease.  The family was informed in October that Morgan’s application for the life-saving drug was denied and immediately asked how they could appeal the decision.  Health Minister Victor Boudreau informed the Canadian Press this evening of the new review.

Andrew McFadyen, Executive Director of The Isaac Foundation, an advocacy, research, and family support organization that specializes in MPS related diseases, was happy with the news.  “We are very pleased with this development – it’s incredible news for the family.  For Morgan, I truly hope that this review takes a serious look at the vast amount of available evidence that exists both in this country and internationally, and I’m calling on the Minister to ensure the review is fair, transparent, and that the opinions and recommendations of multiple experts that deal with this disease and treatment first-hand are considered.”

McFadyen applauds the developments in New Brunswick and the willingness of Minister Boudreau to seek another opinion.  The Isaac Foundation has requested that a panel of 3 or 5 international and Canadian MPS experts conduct the review.  “This way, we have the opportunity for rigorous debate about the drug and its efficacy, and any decision made will always be a majority ruling.”

Jamie Myrah, Executive Director of the Canadian MPS Society, also hopes the new review will be thorough and transparent, free from Ministry bias and interference.  “The Canadian MPS Society also calls on the Minister to ensure a fair, objective, and transparent review of Morgan’s application for treatment.  It is our hope that the true experts – experts from around the world that deal with this disease, experts that treat this disease on a daily basis – have an opportunity to see the baseline data and weigh in on the merits of providing therapy for Morgan.  We also feel like it’s imperative that the reviewers are identified to our organizations, again so we can be sure the process is as transparent as possible.  We want to make certain they are using the true experts to look at this, unlike the initial review that took place.”

Morgan’s mother, Carolle Mazzerole, was elated by the developments.  “We’re thrilled.  It doesn’t feel real.  We have hope again for our son.  I pray that the new review is done quickly and is fair for our Morgan.  The last review took a year for us to receive a decision and Morgan can’t wait much longer.  I really want to say thank you to Minister Boudreau for revisiting this decision, and a sincere thanks to our MLA, Jake Stewart, for his incredible support for our family.”

  #

 For more information about this topic, or to schedule an interview with Andrew McFadyen, please call Andrew at 613-328-9136 or email Andrew at mcfadyena@me.com.  The Isaac Foundation can also arrange interviews with parents of patients currently receiving this treatment in Canada.

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