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.
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.
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.
Sending my love to you Ashlee, Debi, and Paul.
Rest in Peace, Justin.
*** Justin’s obituary can be read here.