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our.daily.adventures

mom to #mightytimothy and #ethanstrong sharing our medical life journey one square at a time.
📍Ontario, Canada

Eeeeeek, this little dude modelled today for @wool

Eeeeeek, this little dude modelled today for @woolydoodle and their “Bright Side” Collection that’s dropping March 14th. He was such a charmer, as always.

When they asked if I could bring one of his mobility devices I knew I had to bring his Scooot from @fireflybyleckey because not only is it stylish and easy to bring along, but it fit right in with all the bright colours 🥰

I can’t wait for warmer weather so we can take the Scooot outside and roll around the neighbourhood 😎

#woolydoodle #fireflybyleckey #fireflysuperfan #ad #scoootbyfirefly #mobilityaid

Even the best superheroes sometimes need a little

Even the best superheroes sometimes need a little lift 🥰

Tomorrow morning at 7:20am est Ethan and I will be doing our live interview with @breakfasttelevision to talk about our experience at @hollandbloorview and the #capesforkids Fundraiser.
You can watch it online at CityTV as well, and we’ll try to find a way to share it with you here after if you can’t access it.

Sharing our journey isn’t always the easiest, and there’s lots we don’t share, but I’ve always said if it helps just one person it’s worth it. And it has. I’ve gotten so many incredible messages, and the community we’ve found is beautiful.
Thank you for being part of our story.
I can’t wait to share it with more people tomorrow morning and hopefully encourage people to help kids like Ethan 💚

Just a little dude ready to conquer the world with

Just a little dude ready to conquer the world with those wakin’ boots 💪🏻

We got a walker to take home and will be starting the process of getting him his own 👏🏻

He gets so excited when he sees it, it’s so sweet.
Now excuse me while I magically add a couple hours to each day to squeeze walker time in 😅

Also, how about that itty bitty belly peeking out 😅🥰

#ethanstrong

Just in case you need a reminder: Inclusion is wi

Just in case you need a reminder:

Inclusion is within everyone’s ability.

Telling your story Is the act of recalling all of

Telling your story
Is the act of recalling
all of the things
you’ve learned from travelling,
and then, figuring out
how to share those lessons
with someone else
who is about to take that same trip.
-MHN

🖤🤍It’s Rare Disease Day🤍🖤 Ethan was

🖤🤍It’s Rare Disease Day🤍🖤

Ethan was diagnosed with Acute Necrotizing Encephalopathy in Dec. ‘19 which caused his brain injury. ANE is a disease characterized by encephalopathy ensued by varying degrees of brain injury. ANE usually follows an acute, mostly viral, infection. Influenza is the leading associated virus. The symptoms of the viral infection (fever, respiratory infection, and gastroenteritis, among others) are followed by seizures, disturbance of consciousness that may rapidly progress to a coma, liver problems and neurological deficits.

“It’s so rare that we are not able to give an incidence number. So, in medicine we like to say how common something happens in a certain percentage of a population, say per 1000 or 100,000, but it is so rare that at this point we aren’t able to give it a number”.
Dr. Michael Esser

The Rare Community sticks together because together we are stronger 💪🏻

🦓 While each disease may be rare, it’s currently estimated that 3.5%-5.9% of the worlds population is dealing with a rare disease
🦓72% of rare diseases are genetic and 70% start in childhood
🦓there are over 6,000 identified rare diseases
🦓 it often takes years for someone to get a diagnosis and people are often misdiagnosed (initially)
🦓due to rarity and diversity it can be hard to navigate research and treatment as international communication needs to happen for care providers
🦓having a rare disease community is often met with loneliness and frustration because not only can it be hard to find people in similar situations but healthcare providers may have limited or no knowledge about the disease
🦓people with a rare disease will end up learning/knowing more about it than their health care providers - because how else will we know what to advocate for
🦓sometimes we need to think Zebra, not horse

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