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Rolling through Life With Easton

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Rolling through Life With Easton

Hi, I’m Easton, and I live with a rare genetic disorder. I face many medical complexities that affect every part of my life.

Each day is a challenge—but it’s also a fight I face with strength, hope, and the support of those around me.

06/29/2026

Late last year we suspected Easton was having pain following one of his violent seizures.After advocating for further testing given he is non verbal and can't tell us where pain is coming from, they found multiple compression fractures along his thoracic and lumbar spine.

A DEXA scan revealed that he has osteoporosis.
Most likely from years of seizure medications and PPI ,along with limited weight bearing given his disability.

Today, Easton is receiving his first infusion to help keep his bones strong and prevent further fractures. journey

06/20/2026

It’s been a while since I’ve posted here, and I know many of you have reached out asking how Easton has been. I wanted to take a moment to share an update from the heart.

The past three months have been an uphill battle for Easton. Countless appointments, hospital admissions, and the exhausting trial-and-error of medications have filled our days. He hasn’t been able to return to school a place he truly loves, where his friends are and there have been many missed celebrations as we focused on giving his body the time it needs to recover from an incredibly challenging year.

I’ve never been one to share every hardship we face. Not because they don’t matter, but because I try to save this space for hope for the moments worth celebrating. And that’s why I’m here today.

When your world changes the way ours did eight years ago, you learn something most people never have to: the little things are everything. The moments others may overlook become milestones. Victories.

Today, Easton went for a haircut.

It may seem small, but for us, it was huge. What made it possible were two very special ladies in his life who met him with patience, kindness, and understanding, and turned something that could have been overwhelming into a moment of success. Because of them, Easton felt safe. He felt supported. And he did it.

Today was a good day and we will hold onto it with gratitude. Thank you to everyone who continues to support, love, and cheer Easton on, even from afar. We feel it more than you know. 💙

03/26/2026

Smiles for purple day!

03/25/2026

Tomorrow is Purple Day 💜 a moment to show support for those living with Epilepsy.

Epilepsy doesn’t look the same for everyone. Each person’s experience is different some seizures are visible, many are not. Some people live with daily challenges, while others may go long periods without symptoms. But every story matters.

By learning more and increasing understanding, we can help break stigma and build a more supportive, compassionate community.

💜 Around 1 in 100 people worldwide live with epilepsy
💜 An estimated 50 million people globally are affected
💜 Up to 70% of people with epilepsy could live seizure-free with proper treatment
💜 Yet, in many parts of the world, up to 75% do not receive the care they need

Wearing purple is a simple way to stand in solidarity but real impact comes from awareness, empathy, and inclusion.

Let’s keep the conversation going. Let’s listen, learn, and support today and every day.

03/01/2026

March is Epilepsy Awareness Month 💜

Did you know epilepsy affects about 1 in 100 Canadians? That means thousands of families right here in Ontario and across Canada are living with seizures, stigma, and the daily challenges this neurological condition brings.

Epilepsy isn’t rare but there are rare forms and experiences within the epilepsy community that deserve attention, more research, and better understanding. Some people have seizures that are resistant to treatment, others live with rare epilepsy syndromes, and all deserve support and compassion. Many of us know that even though seizures can sometimes be controlled with medication, about 30–40% of people with epilepsy continue to experience uncontrolled seizures despite treatment. (This highlights why epilepsy research and awareness are so important.)

⚠️ Another serious reality is SUDEP (Sudden Unexpected Death in Epilepsy) a tragic outcome many people living with epilepsy and their families fear. While SUDEP is uncommon, it’s estimated to account for up to 18% of epilepsy-related deaths and is a leading cause of mortality in epilepsy patients.

March 26 is Purple Day a global day to wear purple, share information, and help break the myths around epilepsy.

✨ Here’s how you can help:
💜 Wear purple on March 26 to show support
📣 Share facts and personal stories to educate your friends
📚 Help break the stigma and misinformation around seizures
🎗️ Encourage better understanding, funding, and research

Let’s stand together this March to support the epilepsy community to educate, to empathize, and to uplift. 💜💪

02/28/2026

Today we recognize Rare Disease Day a global movement raising awareness for the more than 300 million people worldwide living with a rare disease.

Observed each year on the last day of February, Rare Disease Day was launched by EURORDIS in 2008 to shine a light on conditions that are often overlooked, underdiagnosed, and underfunded. While each disease may be rare, together they affect millions of individuals and families across the world.

Living with a rare disease can mean facing:
💜 Long journeys to get a diagnosis
💜 Limited treatment options
💜 Financial and emotional challenges
💜 A need for greater research and policy support

But today and every day we stand with patients, caregivers, advocates, researchers, and healthcare professionals who work tirelessly to improve lives and push for progress.

Let’s raise awareness.
Let’s promote equity in healthcare.
Let’s support research and innovation.
Let’s amplify the voices of the rare disease community.

Because rare is many. And every life matters. 💜

02/07/2026

After a long 3 weeks at SickKids, we’re finally heading home.
Three weeks filled with tests, procedures, countless pokes for bloodwork, IVs, and a PICC line for nutrition more than any little body should have to go through.

Easton is finally well enough to be discharged and continue his recovery at home, with a check-in next week with his amazing medical team. We are beyond grateful for them and everything they’ve done to get us here.

It’s been one hell of a three weeks away from home. Our girls have been so incredibly lucky to have my mom and sister there for them every step of the way. Our neighbours stepped up in big ways too keeping our driveway clear through the crazy snowstorms without us ever having to ask.

And to the countless friends and family who checked in daily, sent messages, prayers, love, and support thank you. Truly. We would not have made it through this without you.

He had to make it home in time to watch the Super Bowl with dad at home!

02/03/2026

Some Toronto Raptors players stopped by today to say hello, wish Easton a speedy recovery, and drop off some awesome swag 💜🏀
Moments like this mean more than you know thank you for the smiles and support!

02/03/2026

So incredibly thankful for Ronald McDonald House ❤️
Thanks to everyone who donates during McHappy Day and those who choose to round up at checkout, this place exists for families when their child is sick in the hospital.

Stays at RMH are never guaranteed and are always based on room availability, but after 12 long days, we were blessed to finally receive a room. Being able to take a real shower, sleep well, and breathe for a moment all while staying close to Easton has meant more than words can explain.

Your kindness gives families comfort, rest, and hope during some of the hardest days of their lives. Thank you for making this possible. 💙 💙

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