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Updates

FEB 2025

Mayo Updates
It's at least 5 hours to Mayo Clinic. I say at least, because Tony has hATTR.
And one of the more distressing side effects is chronic diarrhea.
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In order to travel, Tony makes sure not to eat that day - and sometimes not to drink - as anything can set his system off.
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We leave early enough that he can eat that evening - but even with that precaution, he's up most travel nights with GI issues, making the next morning a bit daunting due to lack of energy and dehydration.
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We ♡ Our ♡ Doc

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  1. Good news on the heart... Numbers look good, and we will see the cardiologist in a year.
     

  2. Our cardiologist offered to lead the coordination between the GI specialist and the Nerve Team. So we have an inside advocate.
     

  3. Our next appointment for the Nerve Team is in the books for March 27-28 and we are officially on the wait-list for the GI specialist (no estimated time yet, but our cardiologist is on top of it)

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Next Steps: All The Mayo Trips

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  • March 27-28, we're headed back to Mayo Clinic for another round of tests and treatment plans with his Nerve Team (Neuropathist Specialists).
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  • We're on call for the GI Specialist - so it could be next week, or in 6 months.

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We're continuously grateful for family members stepping in to watch Corbin for us during these trips.

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Please keep our little fam in your prayers.


Some Good News:

1 We have the BEST team of specialists.
2 There are new medications and treatments being discovered
3 Tony's symptoms seem to have plateaued
(not gotten better, but that isn't expected with current treatments - YET)

We have so many people - all across the country supporting us and cheering us on.

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We'd love to hear from you too! 

Please feel free to connect and send Tony a note of encouragement!

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♥ Sue, Tony, & Corbin

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​​​Thank You

Our online fundraiser just finished. Thank you so much to everyone who gave last year! 

 

If you'd like to make a donation in 2025, you can make a deposit
in person at any Gate City Bank to: Tony Skavlem Benefit. 
We also have an online portal that connects to that account.

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DONATE TO TONY'S BENEFIT HERE

UPDATE ARCHIVE

JAN/FEB 2025 We're headed to Mayo Mid-February, we're headed back to Mayo Clinic for another round of tests and treatment plans. ​ Please keep our little fam in your prayers. Some Good News: 1 We have the BEST team of specialists. 2 There are new medications and treatments being discovered 3 Tony's symptoms seem to have plateaued (not gotten better, but that isn't expected with current treatments - YET) We have so many people - all across the country supporting us and cheering us on. ​ We'd love to hear from you too!  Please feel free to connect and send Tony a note of encouragement! ​ ​ ♥ Sue, Tony, & Corbin ​​​

​NOV/DEC 2024 We've been so lucky in our friends & family. Both Tony and I have been sick, and are just getting better. Our family stepped in and watched Corbin while we recovered. ​​​​​ Curtains & Leaves  We've had friends come down to our little town & help us do things that Tony can't help me do. Any time he raises his hands above his head, his Blood Pressure drops so low he almost passes out. We've had friends help us fixing a curtain anchor and cleaning out leaves from the gutters. And SO MUCH FOOD & LAUGHTER. ​​​ Above Pictured Left to Right: Paul Tweten, Jeremiah Hein, Tony Skavlem, Shawn Thorvilson ​ Floors, Falls, & Training ​ Even with being careful managing his blood pressure, sometimes I find Tony on the floor. ​ We've installed Life360 on Tony and my phone - so he can send me or Emergency Response an SOS. He takes his phone with him wherever he goes. Even if it's to the bathroom in the middle of the night. ​ In November we focused on teaching our son (age 2) how to approach someone on the ground.  Get down by their face and make eye contact Place your hand gently on their face or neck Ask them "Are You Ok?" And wait to get a response. Get another adult to help if they can't get up ​ Last night, I watched Corbin ace this. I'm sorry that it's something he needs to learn. But I'm so proud of him. ​ ​ Connecting To hATTR Families Across The Globe Finally, we've been trying to put together resources for other families with hATTR. We had a woman from Australia reach out this week. Tony & I read her email, talked about how amazing it is that we can help be a resource for people going through this same thing, and invited her to connect with us more often. When you have a rare disease, you end up really feeling for those going through the same thing.  ​ We'd love to hear from you too!  Please feel free to connect and send Tony a note of encouragement! ♥ Sue, Tony, & Corbin ​​

SEPT/OCT 2024 This month, we're focusing on creating memories outside, while the temps stay above zero. Because Tony has lost so much weight with hATTR (not in a fun way) - his body doesn't keep in heat very well. So, he's also been trying out cowls, turtlenecks, and the ever-popular hoodie. We've got a couple of blood draws & x-rays coming up - to help assess internal organ damage or other causes of Tony's intense back pain. Even with the maximum doses of nerve pain medication - he's sometimes in too much pain to move, as his back and leg muscles cramp. In September we focused on teaching our son (age 2) to be a helper when daddy can't walk, and bring him his cane. Some days are really good, and we have family dance parties in the dark before bedtime. Every day is different. And that's hard for toddlers, but we're talking with him about it - he's a smart kiddo, and we want to make sure he knows he's loved, even when his dad can't play with him. This has been a tough mental health month for Tony, but I want you to know he's making the most of every day, and making happy memories with Corbin and me. Sept 18 was our wedding anniversary. 8 years.  If I could write a letter to the us before we married, I would say, "Marry that man. He is worth the unknown, because he loves you and believes you can do great things." (also he makes the best tacos)  Please feel free to connect and send Tony a note of encouragement! ♥ Sue, Tony, & Corbin ​​​​

When you're facing a rare disease, it's easy to feel alone.

Thank you for coming with us for the journey.

Skavlem Family - Photo Credit Andy Garske

Milestones

  • Kent's Anniversary -  We started our fundraiser on Friday, July 12 - the death anniversary of Tony's dad (Kent Skavlem)- who died from hATTR 13 years ago. Since then, we've had a wild online response. 

  • July 2024 - Tony was approved for the 1st of 2 medications he needs to live with hATTR - The SILENCER (which will slow down or stop the amyloid production)

  • September 2024 - Tony was approved the 2nd of 2 medications he needs. - The STABILIZER - this will help keep his heart pumping and is one of the only medications available to hATTR patients that ALSO helps stabilize the brain (to keep the amyloids from causing Alzheimer's

Amy - Loid - Osis. (or hATTR) It’s a mouthful. And it tastes bitter. There’s no cure yet, and this is a rapid-onset disease. Within 1 year, Tony's disease spread to multiple organs, bringing with it a short-circuiting system. We don't know day-to-day whether he'll be able to play on the monkey bars with our son, whether his legs won't work that day. 
He's on the maximum dose of nerve pain medication, and some days it's not enough.

Why Does hATTR Stand for Amyloidosis?
h= hereditary, A= amyloidosis, TTR = the protein that misfolds and creates the amyloid.

If you inherited the gene. You have the amyloid building up in every system in your body. But the disease onset doesn't start until there are too many. From there, it's a rapid onset.

It's genetic. So if one of your parents had it, you have a 50% chance of inheriting the misfiring gene.

If you don't have the gene, you won't pass it on to your kids.

If you do have the gene, each kid you have has a 50% chance of getting the gene.

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