Updates
February 2026
Challenges & Celebrations
2026 Challenges
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After an initial & heartbreaking rejection, a medical plan revision, and 2nd appeal, Tony’s main medication was (re)approved! We had to stop his heart stabilizer treatment to get him approved for the TTR silencer medication. But the most important thing to focus on right now is that his silencer medication got approved. And we're so thankful.
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The main challenge during the flu season is keeping Tony's body hydrated. Currently, he gets fluids intravenously at the Fargo Clinic once a week. We also buy gatorade powder in bulk, and ensure drinks to try and get enough nutrients to stay in his body. He has a high-salt diet as well - again, to try to keep fluids in. Kidney stones are another bi-product of not having enough fluids to pee.
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There isn't a week that goes by where I don't see Tony lying on the floor - his body becomes starved for energy, or his blood pressure drops, and he lies down before he passes out. We've found that frozen fruit helps as a sort of "rescue med" during these times. (We buy $200 frozen fruit every month from Aldi, and are considering buying it in bulk from a restaurant supplier)
Love We Celebrate
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Self-Love: We take time to recharge so we can be present with each other
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Mind-Love: Both Tony and Sue see therapists to heal & grow
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Family Love: We recognize how important it is to invite our family & friends into the pain and into the celebrating.
Family News
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Sue had her 44th birthday (Dec 26) and is looking ahead to a year of designing, writing, & speaking engagements
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Corbin had his 4th birthday (Jan 1) -- and 25 friends and family showed up for a cozy old-fashioned birthday party. His favorite gift by far is a John Deere tractor Mechanical Set gifted by a family friend.
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Tony set up a ceiling hook in the livingroom for an indoor swing. He loves spinning Corbin around (waaaay tooo fast!) And Sue often hears them laughing upstairs while she works in the home office
We hope you and your loved ones find small ways to connect with your family and your neighbors during these winter months. We wish you a Happy Valentine's Day & joy-filled moments in the middle of life's challenges.
❤️ Sue & Tony & Corbin
Our Next Trip
We're headed back to Mayo Clinic to meet up with Tony's team of Specialists in early March. It's a 5-hour trip - more when we need to stop for Tony's disease-caused GI issues.
We hope to continue to revise his treatment plan to manage living with this disease.
We're continuously grateful for family members stepping in to watch Corbin for us during these trips.
Please keep our little fam in your prayers.
If you'd like to make a donation in 2026, you can make a deposit in person at any Gate City Bank to: Tony Skavlem Benefit. All donations are used to cover disease-related expenses, transportation to Mayo expenses, & respite care. No donations are needed at this time, but we covet your prayers, good wishes, and care.
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UPDATE ARCHIVE
DEC 2025 Slowing Down for the Holidays ***EDIT we're cancelling our Mayo trip this week due to storms and uncertain road conditions. Hoping to get back in January/February to reassess treatment plans and address what's not working. 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.
EARLY 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. In order to travel, Tony makes sure not to eat that day - and sometimes not to drink - as anything can set his system off. 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. We ♡ Our ♡ Doc Good news on the heart... Numbers look good, and we will see the cardiologist in a year. Our cardiologist offered to lead the coordination between the GI specialist and the Nerve Team. So we have an inside advocate. 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)
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
Milestones
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Kent's Anniversary - We started our 1st fundraiser on Friday, July 12, 2024 - 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.
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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)
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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