Living With Hattr

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.

05/30/2025

May Update:

Tony had 1ABLE day this last month (able to go outside/do something fun).

The bad days are hard. And we are also thankful for the good days.

We have been to Mayo Clinic appointments 3xs this year. The newest GI tract medications for Tony aren't helping yet, so after doubling the dosage, we are hoping the next medication we try will work.

Keep hoping with us.

04/08/2025

Mayo Clinic is a gorgeous place to watch the sunrise.
So thankful for getting to see a GI specialist today.

Today's lineup of appointments started with an X-ray at 6:45am.

Here we go.

❤️ Tony Skavlem

04/07/2025

We're road tripping to Mayo today for tomorrow's appointment line up. Look at this team of friends Tony's had since highschool and college.

Things to pray for:
* Energy for Tony
* Mayo GI docs could figure out a way to keep food/water in his body
* His heart meds get reapproved by medical insurance
* We get approved for disability insurance

It's been a tough year.
But we have not done it alone.

Thank you to all our donors, to all our friends, and to everyone who has sent up prayers or good thoughts our way.

We love you.

Tony, Sue, & Corbin

03/20/2025

Newest Merch Drop from Shirts From Fargo.
Are you a hat guy? Do you know a hat guy?

Do you look super cute in a beanie? Then these options are for you!!!

Every dollar we make on these goes into Tony's Benefit Fund.

https://shirtsfromfargo.com/organizations/shop-storefronts/living-with-hattr/?sort=newest

03/04/2025

A huge thank you to Nicole from Patient Worthy for featuring our article on How to Be A Friend: Rare Disease Edition.

We're so grateful for how they amplify the stories and voices of patients and caregivers.

https://patientworthy.com/2025/03/04/how-to-be-a-friend-rare-disease-addition/

02/28/2025

Experts Agree! Here's a quick cheat sheet on building a fundraising team! https://www.livingwithhattr.com/post/fundraising-team

02/26/2025

What people do you need on your team?

Storyteller/Writer
Connector
Photographer
Beta Reader

No one being treated for a rare disease likes asking for money.It's ok. People want to help. They just need to know how.Read full article here:https://www.li...

02/26/2025

Take the photos.
Be in the photos.
Keep them.

02/21/2025

Say Something. How to advocate.

Navigating Insurance, Fundraising, and Medical Systems.

02/20/2025

Mayo Update - Feb 2025
Heart, Nerves, Guts

02/18/2025

Mayo Clinic is such a beautiful place. I always enjoy finding my favorite curated art pieces in between appointments.