TONY HAS hATTR
Tony has hATTR.
This is our journey to living with it.
Measure of A Man
I married the kind of man who can make me laugh.
Who can fix things.
Who likes going on adventures in nature,
or sitting at home and watching our son play.
Last summer his body started a slow shut-down.
Beginning with his heart and his digestive tract.
He started losing weight and strength.
Then his fingers and toes started to go numb.
Or burn like they’d caught on fire.
Then his leg and back muscles started to ache from nerve pain and dehydration.
Amyloidosis shuts down multiple systems in the body.
Amy-What?
We drove to Mayo Clinic (The closest treatment center) back and forth for 3 weeks.
He underwent 40 tests with a team of Amyloidosis specialists.
This disease is progressing rapidly.
His nervous system and his heart first.
But when your whole body is shutting down - you need to prioritize which expensive medication to apply for first.
Tony needs 2 medications to live with Amyloidosis: Silencer & Stabilizer
Medications Needed to Live
Tony needs 2 kinds of medications to live with Amyloidosis.
The first is a Silencer. The second is a Stabilizer.
The Silencer medications are all new. None of them were around when his dad, Kent Skavlem, was dying of the same disease. Because they are new, they are expensive.
Why are they amazing?
Because they slow or halt the disease.
It’s not a cure, because it won’t reverse the damage to his heart, nerves, lungs, and kidneys.
The next medication - the Stabilizer - will help stabilize his heart’s functionality - which is already affected by the disease.
The closest treatment center for Amyloidosis is Mayo Clinic a 5-hour drive.
What's Next
We are in the middle of applying for financial aid where applicable and to the pharmaceutical companies for the Silencer and Stabilizer drugs.
We've been accepted by Lend A Hand Up to use their portal, and they'll match 20% of your donations (up to $5,000).
We set up a Benefit Fund through Gate City, and you can donate directly there to Tony Skavlem Benefit.
We got approved for the silencer in July!
We got approved for the stabilizer in September!
Now we need to try to manage pain and GI functions - we'll be going back to Mayo Clinic mid-October.
What will donations be used for?
Travel expenses to Mayo Clinic.
For gap coverage of medical costs.
And for respite care or childcare as needed.