My nephew may die before me

My nephew may die before me.

I hate saying that out loud.

He’s 2.5 and he was born with a rare genetic disease called Myhre Syndrome. Reports show that 240 people worldwide have it, and he’s 1 of them. We did the math when we found out his diagnosis and he’s approximately 1 in 3.5M that have it. Sure, it makes him unique but it also makes us, his older, emotion-absorbing village, live on the edge of our seats.

Hospital visits are weekly and there’s no certainty that our cute ‘ol Henry will be able to come home. Fear of death is our norm and my sister and her husband have to experience the worst of it while celebrating all the major (what some would call minor) milestones.

He was born mid-pandemic which meant my sister (or hub) was often alone in the hospital room learning about his new disease, simultaneously dreaming of his future (despite the harsh reality that it’s limited). Pandemic restrictions made it impossible for me to visit, and there was a one-parent policy. It was hell for someone like me to not be able to go — if you know me, consoling dear ones during hard times is part of my programming. It’s just the way it is.

I was finally able to visit Henry with my partner this past January, and it hit hard. Even walking into the hospital gave me a weird sense of relief that I had been waiting for two years, but also major fear. I went three times during that hospital visit week — as if I was trying to make up for lost time.

On one of those visits, I went to see my sister and observed as she spoke with doctors, trying to understand why her son’s lungs look worse than an 80-year-old's. Witnessing her at this moment made me feel proud and sad. Proud because she is doing her f*cking best (along with her husband who is Henno’s main man) and sad because I couldn’t hold her back the way I was able to 2.5 years later. You could feel the power emanating from her back and the new wisdom she’s garnered as a mom with a complex kid.

It’s because of her and her husband, and modern science, that Henry is inching closer to his third birthday in the summer. A moment when we dream of his future and celebrate his day. But Myrhe doesn’t make this simple. It casts a shadow on what we hope for him and leaves us completely detached from what his future looks like, apart from the worst.

So, my sister is doing what she does best. She’s organizing an event to raise funds for Myhre Syndrome during Rare Disease Month. An event prompted by her will to find a cure, but also because three of Henry’s baby/toddler friends with Myrhe Syndrome recently died.

That could be my nephew one day and I don’t want it to be. I love him and he brings so much joy to everyone — strangers, physical therapists, doctors — heck, the doctors at SickKids celebrate his every move and swarm around him like he’s a famous little dude (well, he kinda is in my opinion).

And you can celebrate him too, would you?

Join us and make a difference on March 3…tickets here

This article was vetted by Henry’s parents