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Rolling through Life With Easton

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Trenton, ON
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.

12/14/2025

Thank you for the toys r us shopping experience! Easton is not well enough to go out but his sister Peyton went and did some Christmas 🎅 shopping for him!

12/12/2025

9 days later and this boy is ready to go home and continue care as an outpatient!

12/10/2025

💛🏒 Today was a very special day for Easton! He was lucky enough to get a visit from Toronto Maple Leafs stars William Nylander ( #88), Troy Stecher ( #28), and Michael Maccelli ( #63)!

When asked who his favorite player was, Easton didn’t hesitate he reached right over to Nylander!

Their visit brought smiles, laughter, and some much-needed cheer to his day at SickKids Hospital. 💙✨

Thank you to these incredible players for taking the time to brighten the lives of kids who need it most. Moments like these remind us how powerful kindness and support can be!

12/08/2025

This weekend tested us in every way, but Easton found his smile and the strength… its going to be a long road of recovery but this boy has shown time and time again he is strong. Thank you to everyone who has had him in their thoughts.

12/07/2025

Being in the hospital with your child can be terrifying. You’re running on no sleep, and your mind and body are in overdrive. You keep thinking, How did we get here? What did we miss? What could it be? You find yourself scrolling back through old emails with doctors, clinic notes, test results so many thoughts flood your mind when a complex diagnosis suddenly takes a turn for the worse.

As I stepped out of the room just to catch a breath of fresh air and grab a coffee to help me stay awake and alert so I don’t miss anything, I sat down for a moment simply to breathe. And what I saw brought a tear to my eyes. It reminded me of all the things I am grateful for.

I’m grateful for the community of friends and family who continue to pray for us. I’m grateful for those who have sent money or gift cards paying it forward so we can get this cup of coffee, or a hotel room for a few hours of rest and a shower.

Thank you to everyone who continues to support my special boy, Easton. 💛

12/05/2025

Easton, could you use some prayers…💙
It’s been a rollercoaster of a week. He’s been in and out of the hospital, seizure control has been lost, and he’s fighting so hard to regain some control.

We’ve had to put the NG tube back in to keep him hydrated and ensure he can get the meds he needs. His sisters are trying to stay strong at school, though their minds are with him every moment.

Sleepless nights and the mounting costs of hospital visits are a stress no family should have to bear just to keep their child safe.

We are so grateful to everyone who has reached out with home cooked meals, messages, and positive vibes it truly goes a long way.

Easton is a fighter. 💪 He will not let epilepsy win.

12/02/2025

We are looking for an RN or RPN for 32 hours a week and PSW for 15 hours a week in home Trenton. Please share with anyone you may know that is looking for work and in these fields. Even if they cant do all the hours but can do a few each week is better than no hours being covered! Thanks

11/29/2025

Another night spent in the emergency room for my little man. Thankfully they could calm the storm at our local hospital and we didnt need to be transferred to the city or be admitted! Home full of sedation to get some much needed sleep.

Another day, another fight,
with epilepsy’s endless night.
A battle waged inside the brain,
some days calm, some filled with pain.

For some, the meds bring freedom’s light
a quiet mind, a peaceful night.
For others, surgeries or devices
push back the storm in careful slices.

And some find freedom for a while,
a borrowed breath, a fleeting smile;
others hold it long and strong
the journey different, never wrong.

No two paths are ever quite the same,
each person carrying their own flame.
Some never face emergencies,
while others meet them endlessly.

It’s something you can’t understand
unless you’ve lived it hand-in-hand—
the sudden shifts, the unseen fear,
the hope you guard, the weight you bear.

For those who fight it every day,
and families walking the same hard way,
life becomes survival mode
a shared, unchosen, heavy load.

Yet still you rise, through dark and dust,
with courage stitched from grit and trust.
Another day, another fight
and still you reach toward the light.

11/27/2025

Thank you, Joy Blooms! The winner of the Christmas planter donated to our raffle is absolutely delighted with your beautiful work

$Just another example of how refractory epilepsy can turn life upside down in an instant.Yesterday was supposed to be sim...$

11/26/2025

Just another example of how refractory epilepsy can turn life upside down in an instant.
Yesterday was supposed to be simple just a routine casting appointment for Easton’s club foot. The first cast came off beautifully, and the correction looked great. Because it went so well, the team decided to cast his other foot too, hoping to reduce the number of future appointments.

But Easton’s brain was already in overdrive. Stress, sensory overload, and lack of sleep all of which he’s been struggling with since the previous cast are huge seizure triggers for him. As the last cast was being finished, his little body couldn’t take any more, and he went into status episodes. We went straight to the ER and were admitted overnight for observation.

After talking with the team, it’s clear that Easton’s seizure control just isn’t stable enough right now, and his sensory system cannot tolerate the casts. The good news? He is SO much happier today without them and with the magical word “discharge.” 💜

Chronic epilepsy is unpredictable, exhausting, and relentless, but Easton keeps fighting through every twist and turn. And so do we.

💜

11/24/2025

Early morning procedures mean a night with dad at the hotel! Trying to bring some brightness to his day after a hard week with his cast and uncontrollable seizures.

If Easton Could Talk

If Easton could talk, I know he would say,
“Mom/Dad, I just want a normal kid’s day.
I want to run wild and tease my sisters with cheer,
Laugh in the sunshine with nothing to fear.

I want to go to school and play with my friends,
Build messy adventures that never quite end.
I want dirt on my knees and grass on my shirt,
Not hospital beds or the memory of hurt.

I don’t want the needles, the blood draws, the pain,
The IVs that come again and again.
I don’t want these pills that make me feel strange
Mom/Dad I hate how they change me…

Why can’t I be typical, why can’t I be free?
Why does all this have to happen to me?
Hold me a little longer, Mom/Dad please don’t let go…
I’m trying to be brave, more than you’ll ever know.”

11/18/2025

Waiting for his procedure he is a happy boy now but when he wakes up he may not feel the same! Finger crossed all goes well!
Update: managed to have his procedure with minimal sedation! First set of serial casting completed ✔️ now to let it do its job until he is back next week for removal and another cast.

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