Hudson’s Journey with Spinal Muscular Atrophy- SMA Type 2

04/19/2026

And just like that we have a 4 year old in the house! Happy Birthday Hudson🥳❤️

We had a family bowling party to celebrate 🎳

04/18/2026

When your uncle gets a new Harley ya gotta check it out, with gramps right beside☀️

04/17/2026

Someone got his big boy bed all delivered and installed today! Can you tell he likes it😂

Yes it’s big, it’s actually bigger than the measurements we were originally given when picking the size but doesn’t hurt.. we also sized up so we wouldn’t have to go thru the fight in 5 years time for it (plus when already having one, getting funding approved can be difficult..so this way he’s set)

There’s lots of room for any equipment needed (like cough assist or suction machine)

The bed does have a remote and it goes up and down, as well the head and feet both tilt in. The head being able to tilt is big for when Hudson is sick and needs to be sitting up, in the past we used a wedge pillow for this.

The whole inside is also padded, with his autism he will sometimes head but things when he gets frustrated. Having the padding will ensure he doesn’t hurt himself, as currently he can get bruises on his forehead.. as well as bruising from his arms/legs getting stuck between the crib rails, which won’t be an issue at all anymore.

This is going to make things so much easy for Hudson and hugely for me❤️

04/14/2026

The new normal, making sure he has his AAC device near by.
He’s doing really good with it so far, still a big learning curve for little man.. but if I help him with navigating the folders he has no issue looking for what he wants to pick to say (of the ones he’s learned so far) even I’m trying to remember where what is😂
Viva works with him each day they are here with a couple different things but the aac device is definitely one, slowly introducing new words on the device so he doesn’t get overwhelmed

04/13/2026

We were away to Stan Cassidy this morning.. Today was the motor eval we have to do every single year, to ensure he has approval to continue the coverage for his Spinraza spinal injections.. see where it’s such an expensive drug (yes he’s our million dollar boy by now 😂) every year they have to do a motor evaluation to see if Hudson has stayed the same, improved, or gotten worse in any aspects. Each year we keep our fingers crossed that there’s no decline (which it isn’t hard to see his constant improvements) but if his motor skills ever downgraded, so he wasn’t doing as well motor skill wise.. he could lose the coverage that pays for the Spinraza injections, which would be devastating as there’s no way any normal person could ever afford it.. however yet again he soared by his last years score with his improvements this past year!❤️

Hudson works so hard for how far he has come the past couple years. It’s been a complete game changer for all of us involved in his life but we are very happy with how happy and healthy he has done so far in his life.

Now for a busy week between sissy’s sports and viva before the birthday weekend starts for little man..which kicks off on Friday with getting his new big boy medical bed delivered and set up!!! Thanks to national seating and mobility 😊

04/13/2026

Dr. Wendy Stewart, absolute amazing person💙
She’s the one who took one look at Hudson, before he even got tested for it and knew that it was spinal muscular atrophy!
I’ve heard and seen nothing but amazing things from her.. We were lucky to have her as a part of Hudson’s journey from the very beginning of his storey till her recent retirement.
We wish her all the best as she continues to change lives every single day

04/12/2026

Hope everyone gets to enjoy the beautiful weather today, like little man is in his jeep🥰

His bobo and gramps got him this for Christmas, it comes with a remote so I’m able to drive it and he can enjoy being a boy💙

04/11/2026

Crazy to think 8 more days and we’ll have a 4 year old in the house🥳🎁

04/10/2026

So proud that our local school has joined in! As Muscular Dystrophy Canada has helped many even in our little community over the years🥰
Harvey High School

Middle school leadership organized event coming up. Middle school will be joining in this event to help support an important cause!

04/10/2026

Viva has been focusing on the aac device with Hudson when they come out twice a week, helping little man have a voice everyone can understand🥰

04/08/2026

Got the call, Hudson’s new sleep safe/medical bed is in! They are coming out end of next week to get it set up for him.. super exciting for both Hudson and me🥰

The fight for the needs my child has can be exhausting and aggravating, as everything he needs is always a fight and jumping thru loop hole after loop hole.. but when stuff finally gets done and he gets what he needs it makes it all worth it.
Hopefully little man will love his new big boy bed, I know I will as it will adjust up and down..etc making it much easier for me caring for Hudson.
Will post photos once it’s here and together 😊

04/05/2026

We wish all followers a happy Easter!

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