Kelsie Boucher

At the crossroads of DNA and life

This year, a discovery changed how I see both my health and Taite’s. We learned that we share a small typo in the FOXP3 gene, a tiny shift in our DNA with very real consequences.

For Taite, it explains IPEX syndrome, a rare and complex diagnosis that has shaped so much of his childhood. For me, it’s the missing link between years of conditions that never quite connected: IBD, PSC, RA, Raynaud’s, and thrombosis.

It’s strange how something invisible, just a single alteration in a strand of code, can ripple out into entire chapters of a life. For years, I carried these labels without a map, wondering how they could coexist inside one body. And now, the map is here.

When I reached my mid-twenties, the X chromosome carrying this typo grew louder, and this year came clarity. Not in the sense of answers fixing everything, but in the sense that the scattered pieces finally formed a whole.

There’s a quiet kind of peace in that. Not because the path forward is simple, it isn’t, but because I finally understand the ground I’m standing on.

IBD, and everything that walks alongside it, is still part of my daily life. But now, it’s framed by knowledge, and knowledge makes space for choice, perspective, and even acceptance.

This isn’t the end of the story. It’s just one of those moments where the light shifts, and suddenly you can see a little more clearly where you’ve been, and where you might be heading.

It has a new meaning this year

They say “Live Fearless” like it’s some mantra you can just will into existence. Heck, I even said last year it’s about simply fearing less. Like fear is something you wake up and decide not to have anymore. But fear doesn’t just disappear. Sometimes, it moves into your bones, into your breath, into the spaces you thought were safe.

This year, I’m doing the Live Fearless Challenge with Crohn’s & Colitis Australia, but not actively to raise money. I’m doing it because I need something that’s just for me. Something to help me find the spark I lost somewhere between hospital rooms and sleepless nights.

Over the years, I’ve spoken about living with ulcerative colitis (UC). I’ve had surgeries. I live with an ostomy bag. I’ve quietly carried Primary Sclerosing Cholangitis (PSC) and Rheumatoid Arthritis (RA), and still tried to make it look manageable by putting on a sequin power suit, and a power-colour lipstick.

The Live Fearless Challenge has always been my space to be honest. To speak about scars, blood, inflammation, and fatigue. To make people uncomfortable in speaking my truth. To let others living with invisible illness feel seen.

In previous years, I’ve raised a couple of thousand of dollars for Crohn’s & Colitis Australia, and I’m incredibly grateful for every person who gave, who asked, who cared. But this year is different.

This year, I’m not here to actively fundraise. I’m here to advocate. To speak. To survive, loudly.

Because earlier this year, doctors suspected my son might have inflammatory bowel disease (IBD); and I automatically cried in the emergency room. It shook me, because I know too well what chronic illness demands. What it takes from your body, your spirit, your family. What it means to live in a body that feels like a battleground.

Little did anyone know he would be diagnosed with: Autoimmune Hepatitis, Type 1 Diabetes, Autoimmune Enteropathy, and now IPEX syndrome (or IPEX-like to be technical while we achieve that 3% required in clinical research) that impacts multiple systems and every part of our daily life

People often call me resilient. Like it’s a compliment. Like resilience is a choice you make, a strength you can summon on command. But what they don’t say is the cost behind that word. They don’t see the nights spent broken, the silence forced to keep others calm, the parts of you that are shattered but hidden away.

To be called resilient can feel like a pressure to never show weakness, as if vulnerability is failure. It can be a trigger, reminding you that the world expects you to keep surviving without a pause. But survival isn’t always brave. Sometimes, it’s just exhaustion. Sometimes, it’s the quiet decision to keep breathing when everything inside you wants to give up.

So no, this isn’t about being fearless. It’s not about being strong. This year, the Live Fearless Challenge is personal in a whole new way… It’s about visibility… About saying: chronic illness isn’t always a story of triumph, sometimes, it’s just a story of getting through the day.

It’s about naming what most people ignore, that people can look “fine” and be managing more than you’ll ever know. It’s about starting conversations that matter: Ostomy bags. Feeding tubes. Blood. Grief. Guilt. Uncertainty. It’s about honouring the messy, human, imperfect side of survivorship.

So if you see me doing this challenge again, know this…

I’m not actively fundraising. I’m not trying to inspire. I’m telling the truth… Because this year, that’s what fearless looks like…