Living With Hattr

04/10/2026

TFW your friends show up and grab a button...get yours at livingwithhattr.com

04/10/2026

New Merch Just Dropped.
Buttons. Totes. Tanks. & Tees.
livingwithhattr.com - Click Our Merch
(all profits go toward illness expenses)

03/20/2026

Super, man.
(Get your winter merch before it's gone)
livingwithhattr.com

03/20/2026

Happy Birthday to Tony Skavlem! (3/19)
If you can leave him a message below - that would be amazing.

Here's mine:
Tony -
I see you show up for Corbin to make him feel loved every day.
Being a parent of a toddler takes a lot of energy.
Living with hATTR takes a lot of energy.
Showing up every day doesn't mean you have the energy to do projects, run outside, or wrestle our son every day. Some days it looks like listening to music together. Or watching old movies. Or echoing back sound effects while Corbin creates a story.

You're more amazing than the day I married you.
And I'd do it all over again.

03/09/2026

Tomorrow is Mayo Day! Keep us in your prayers.

03/02/2026

I don't have a lot of photos of Tony this year.
He's had more tough days than good days.
BUT we are together as a family every day.
Good days are good.
And bad days we weather together.

On the good days this year he's gotten to visit his brother Ian in Grand Forks, and plans to work with Tyler doing manly fixing things with tools and stuff.

He's also set up his dad's old stereo system with Corbin, and they listen to music for hours together.

On the good days we dance.
And laugh.
And hold each other tight.

I think we'll look back and see they were all good.

03/02/2026

Some interesting news on treating Polyneuropathy with OT therapy!

Occupational therapy is a key part of managing familial amyloid polyneuropathy, a disease marked by damage to the body's peripheral nerves.

12/11/2025

This is from 2 summers ago. And though Tony hadn't started treatment yet, his body hadn't started to look sick yet.

We're headed back to Mayo clinic next week to see if there's anything we can do to keep more calories/nutrients/fluids in Tony's system long enough to help his body stop eating itself.

During this holiday, we're slowing down as much as possible.
We're saying no to screens, and yes to family.
We're thanking each other.

We're here. We're together.
We're Living With Hattr.