Jonny's Journey. A Path to a New Beginning.

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Jonny's Journey. A Path to a New Beginning.

Meet Jonny, who was born with a rare metabolic disorder called OTC Deficiency.

Follow his journey ahead as we look to give him a new beginning with a Liver Transplant.

02/28/2026

💚 Rare Disease Day 💚

Rare Disease Day hits differently for us.

Before transplant, our world revolved around OTC Deficiency. The rare metabolic disorder that brought us onto this path. A condition where the body cannot properly clear ammonia from the bloodstream. Something invisible… until it’s not.

For years, we lived watching for subtle signs. Headaches, nausea, unusual fatigue, confusion, personality shifts. Things that might look minor to most people, but in someone with OTC can signal rising ammonia levels and the risk of a life threatening crisis. Bloodwork wasn’t optional. It was urgent.

Seven months ago, that chapter closed in a way we once only hoped for. Jonny’s transplant ended the daily battle with OTC. His new liver gave him freedom from the constant risk we carried for so long.

But today isn’t about closing the book.
It’s about awareness.

Because there are families still living in that hyper-vigilant space. Families counting grams of protein. Families rushing for ammonia checks. Families needing doctors, teachers, and communities to recognize symptoms quickly.

I’m sharing a short 2 minute video today to help others understand what to look for and when ammonia levels should be checked.

Rare doesn’t mean unlikely.
Rare doesn’t mean unimportant.
And rare families deserve loud support. 💚

https://www.facebook.com/share/v/18DJGebWM5/?mibextid=wwXIfr

02/26/2026

💚 7 Months Since the Gift of Life 💚

Today marks 7 months since Jonny received his new liver. A life changing gift we will never take for granted.

It’s been a month filled with life in the best way.

School trips.
School skating.
And even giving jiu-jitsu a try.

Seven months of healing.
Seven months of hope.
Seven months closer to the life we fought so hard to reach. 💚

Month by month, we are learning what normal looks like again. Our new normal.

And it is beautiful.

02/09/2026

🚆 Homeward Bound with Reassurance 🚆

We’re on the train heading home, right on schedule, and feeling so incredibly thankful. Jonny’s appointment went exactly as we hoped. Quick, smooth, and reassuring. His blood work came back showing that his body is continuing to welcome and accept this gift of a new liver. Hearing that never gets old, and it’s something we hold with deep gratitude every single time.

We’ll head back to Toronto again at the 9-month mark, with some routine blood work along the way.

Last night in the city, Jonny had one request: Popeyes. One trip quickly turned into two, and before I knew it, he had polished off wings, thighs, and a drumstick without a second thought. Totalling well over 120grams of protein. There was a time when his entire day revolved around 28 grams of protein total. One wing would have been his limit, and everything after that would have been carefully managed. Watching him eat freely now still feels surreal.

These days, life has found a calmer rhythm. Winter has slowed things down, but in good ways. Jonny has been back fencing, has been enjoying a weekly youth church group, and this week he’s even going to give wrestling a try. A contact sport once completely off the table. Not anymore.

We’re learning how to live without fear driving every decision.
And we’re having a little fun along the way.

Thank you, always, for the love, prayers, and support that continue to carry us. 💚

02/08/2026

🚆 Back to Toronto We Go 🚆

We’re on the train and headed back to Toronto for Jonny’s next clinic appointment tomorrow morning. Just the two of us again. My boy and me. 💚

We’re hoping for a repeat of last time: in, out, and back home in the blink of an eye. Those are our favourite kinds of appointments.

Mr. Chucky is holding down the fort at home. He can’t miss Monday’s 100 Days of School, where he’s the star student, so Grandma has him covered.

As always, your prayers, good vibes, and support mean more than you know. They carry us through these moments more than I can put into words.

We’ll update everyone tomorrow and let you know how Jonny’s new liver is settling in. 💚

01/26/2026

💚 6 Months. A Huge Milestone. 💚

Today we celebrated Jonny’s 6-month liverversary. Six months of healing, strength, and learning what life looks like when fear no longer leads the way.

We started the morning with a little celebration in bed and gave Jonny full control over how he wanted to mark the day. First request? Unlimited screen time. On a cold, snowy day like today, that one was an easy yes.

Next on the list was CTC Obstacle Course, where the boys spent some time climbing, swinging, and showing off their inner Alex Honnold after watching Skyscraper last night. Watching Jonny trust his body and push himself without hesitation was something I quietly soaked in.

The rest of the evening slowed down in the best way. Cracking open yet another Lego set for each of the boys and somehow them finishing it before my eyes, followed by Jonny’s favourite dinner. A loaded bourbon BBQ steak and cheddar sub from Subway.

There was a time when days like this came with constant calculations for energy, food, hydration, and the fear that one wrong move could tip everything sideways.

But today?
Do you, kid.

Six months in. Halfway to one of the biggest milestones for transplant patients and a reminder of just how far this boy has come.

So proud. So grateful. 💚

01/14/2026

🎉 12 Years of Jonny 🎉

Today my boy turned 12 and what a year he has come through.
Ages 10 and 11 asked more of him than any child should have to give. They were years of hospitals, procedures, recovery, and learning how strong a kid can be when he shouldn’t have to be. Moments people don’t experience in a lifetime.

As we step into 12, my biggest hope is simple:
Less hovering from me.
More freedom for him.
Freedom in his body, his choices, and his everyday life.

And more than anything, I wish him a year where he doesn’t have to prove how resilient he is. A year where he doesn’t have to be strong or brave or push through hard things.

A year where he can just be.
A 12 year old whose biggest worry is homework.

Happy Birthday, my sweet boy. 💚
Here’s to freedom, laughter, and a lighter year ahead.

01/05/2026

Christmas Break Recap ❄️

Our Christmas break was full in all the best ways with some skating, swimming, and more tobogganing than I can count. The kids spent endless hours with their cousins and squeezed in time with friends along the way, filling our days with fresh air, movement, and laughter.

Most importantly, everyone is healthy. That alone never goes unnoticed around here.

We’re heading back to school tomorrow, and I’ll admit I was bracing myself for the Sunday scaries today. But Jonny has handled this transition with so much perseverance and calm so far. Fingers crossed tomorrow’s first day back goes just as smoothly.

Grateful for a break that felt normal, active, and full of togetherness. One day at a time and tonight, feeling thankful. 💚

01/01/2026

🐍➡️🐎 New Year’s Day — Leaving Survival, Entering Freedom

As we step into a new year, I find myself reflecting less on resolutions and more on what we’ve survived.

For so long, our life was shaped by Jonny’s condition. Every day was measured, protein counted, symptoms watched, emergency plans ready. I lived with constant awareness that his body could turn on him without warning. Joy was present, but always guarded. Life was lived carefully, deliberately, and with fear sitting quietly in the background.

The Year of the Snake asked us to shed that life.
Not gently but completely.

It stripped away the version of motherhood that required hyper-vigilance.
It took the diagnosis that dictated my days.
It forced us through the unthinkable so that something new could take its place.

Jonny’s transplant didn’t just change his health it changed the way we exist. We are no longer living in constant calculation or crisis prevention. We are learning what it means to live without restriction, without the weight of “what if” attached to every decision.

Now we enter the Year of the Horse
A year of movement, strength, and forward momentum.
A year of freedom earned!
A year where we trust what we’ve learned, honor the road we walked, and move ahead with purpose.

I don’t forget where we came from.
But we no longer live there.

Happy New Year from my family to yours.
Here’s to health, healing, and the courage to keep moving forward. 💚

12/25/2025

🎄 Christmas Morning, Five Months In 🎄

This morning feels different and not just because it’s Christmas. Today also marks five months since Jonny received his new liver. Five months of healing, of milestones, of learning what life looks like on the other side of something I once feared so deeply.

2025 was a year that reshaped our family in ways I never expected. It stripped things down to what truly matters and showed me how fragile, yet incredibly powerful, life can be.

Watching the kids open their gifts today, the games, the lego, the fishing gear, I was reminded that the most meaningful gift this year wasn’t wrapped or placed under the tree. It’s the gift that gave us time. Time together. Time for health. Time to dream forward instead of just survive.

Five months ago, everything changed. And this Christmas, we’re holding that change close Grateful, humbled, and deeply aware of how precious every ordinary moment really is.

Wishing you all a Christmas filled with peace, perspective, and hope. 💚

12/19/2025

💚 Grateful Beyond Words 💚

I feel incredibly lucky and blessed to share that we’ve connected with the Simon Keith Foundation, and they will be funding Jonny’s fencing for the year.

This amazing foundation supports kids post-transplant as they work their way back into regular routines, activities, and sports, encouraging healthy, active living after transplant and reminding these kids that their lives don’t stop, they begin again.

For Jonny, fencing has been such a positive outlet, a place to move his body, build confidence, and feel like himself again. Knowing he can continue without barriers is a gift I don’t take lightly.

Yesterday, we received a box of swag from the foundation, and let’s just say… we will be showing it off in style. 😄

We are so deeply grateful for the support, generosity, and belief in kids like Jonny. Thank you, Simon Keith Foundation, for helping my boy and so many others return to life, movement, and joy after transplant.

12/15/2025

🚆 Locked, Loaded & Heading Home 🚆

What a smooth morning! We were in for bloodwork, had Jonny’s clinic appointment, and were back on the train by 11:30 heading home. Exactly how we hoped this trip would go.

The very best news?
Jonny’s bloodwork came back absolutely perfect. His new liver is doing beautifully. Truly the greatest gift we could have received this holiday season. 💚

We’ll be back in Toronto in about two months for his next follow-up, with some routine bloodwork in between.

Friends… we are doing it. This is really happening. Life feels good, hopeful, and full of gratitude. This gift is one I will never, ever take for granted.

Thank you for all the love, prayers, and positive vibes that continue to carry us. 💛

12/14/2025

🚆 Toronto Bound Today 🚆

Jonny and I are heading to Toronto today, just the two of us. Our goal is to get in and out as smoothly and quickly as possible. And I have to say… my present self is very grateful to my past self for booking the train, especially with this winter snowstorm happening. ❄️

Jonny has a clinic appointment tomorrow morning, and we’re heading in with all the positive vibes. It’s been about six weeks since his last bloodwork, and while that’s part of the process (and a sign that his body is doing well), the waiting can be hard. These are the numbers that reassure me his new liver is settled in and happy.

The longer gaps between tests mean things are going right and I keep reminding myself that this team is a well-oiled machine. They know exactly what they’re doing, and if Jonny needed more frequent bloodwork, it would be happening. This is what I tell my anxiety… on repeat.

So for now, we wait, we trust, and we take it one step at a time. Please keep us in your thoughts, and I’ll update everyone tomorrow with how things go. 💚

Address

London, ON

Website

https://www.giftoflife.on.ca/resources/pdf/transplant/PRELOD_Brochure_April_2023.pdf, https://www.diabetes.ca/en-CA/reso

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