In 2019, my little brother Ben died suddenly from SUDEP (Sudden Unexpected Death in Epilepsy). He was only 19 years old.

Some losses divide your life into a before and an after. Losing Ben was that kind of loss for me.

But Ben was so much more than his death and its cause.

He was hilarious, kind, mischievous, and exceptionally good at being an annoying little brother. He would hide behind doors just to scare me, stomp around loudly enough to give an elephant some competition, and somehow win almost every round of sibling torment.

He was also the one who noticed when I was sad and quietly came to sit with me, even when he didn’t know what to say. He was always there for me, just as he was for the people he loved.

We could spend hours playing football or ping-pong, with Ben inevitably insisting, “Come on, Robin, just one more rally.” And a quick drive that was supposedly “not too far” could somehow turn into an hour and a half together.

Its the completely ordinary things I miss the most; where once there was stomping feet barrelling up the stairs, now the silence reminds me of his absence.

Ben was someone I thought I would know for my entire life. Losing him didn’t just break my heart; it shattered part of my identity. So much of who I was had always included being Ben’s big sister. I never imagined there would come a time when having a brother would become something I had to explain in the past tense.

Even now, the harmless icebreaker question, “Do you have any siblings?” can stop me in my tracks. There still isn’t an answer that is quite right.

To keep him alive in my heart, I do things that honour him.

This October, I’m taking part in My Way to 5K and raising money for SUDEP Action in Ben’s memory and to spread awareness that sudden death can happen in epilepsy, something of which I was woefully ignorant of before Ben died. That’s why raising awareness matters so much to me now. Families deserve information, research, education, and support before SUDEP becomes a word they learn in the worst possible way.

I’ve wished a million times that I could change what happened. I can’t, though I have bargained and asked the “what ifs” a million times.

What I can do is keep carrying Ben forward—his kindness, his ridiculous sense of humour, his enormous heart, and the life he should have had.

So every kilometre is for him, and hopefully for a future where fewer families have to learn about SUDEP through loss.

If you can donate, thank you. If you can’t, sharing this page and helping even one more person learn what SUDEP is matters just as much.

And Ben—thank you for being you. This is for you.

P.S. I still won’t tell your French professor I wrote that paper for you.