We have spent so much time going back and forth about starting a GoFundMe because asking for help is something we have never been comfortable with. We have always done our best to carry our own burdens, find a way forward, and handle whatever life has placed in front of us on our own. 

But we have had to accept this is something we simply cannot do alone. 

With incredibly vulnerable hearts, we are reaching out and asking for help. 

AJ (Austin) is 35 years old. He is an amazing husband, a devoted dad to our four boys, ages 1–12, and someone who has always worked hard to provide for his family—often working 40–60 hours a week. 

In January 2026, our entire world changed when AJ was diagnosed with Huntington’s Disease (HD). 

For those who may not be familiar with Huntington’s, it is a rare, terminal brain disease that progressively damages nerve cells in the brain. As the disease progresses, it can affect movement, thinking, behavior, and a person’s ability to function independently. It has often been described as experiencing aspects of Parkinson’s, ALS, dementia, and Alzheimer’s all at once. 

There is currently no cure. But there is hope in a brain surgery, AMT-130, a disease-modifying gene therapy currently being evaluated for approval by the FDA for Huntington’s Disease. Unlike traditional treatments that require daily medication or repeated injections, AMT-130 is delivered through a single, highly specialized neurosurgical procedure. During the procedure, surgeons use real-time MRI-guided stereotactic technology and micro-catheters to deliver the therapy deep into the brain. This is the first gene therapy in history to show a slow down of the disease. 

It does not reverse damage that has already occurred, but has shown to slow the progression of the disease to give us more time. Early clinical-trial results have shown encouraging potential, including substantially slower disease progression in participants receiving the high dose over the three-year study period. 

The procedure itself is extensive, potentially lasting 12–20 hours, followed by a long recovery. We anticipate AJ could be unable to work for approximately six months while he heals. We may need to travel out of state, and potentially out of the country, to pursue this opportunity. But the reality is that preparing for this surgery means preparing for months of healing while also facing travel, medical, recovery, and everyday living expenses raising our 4 children. And because Huntington’s is a terminal diagnosis, we are constantly having to balance preparing for what may come with trying to live in the present. 
 
It is frightening. It is also something we feel we have to fight for because this could potentially give AJ—and our family—something we desperately want: more time together. 
 
And that brings us to the hardest part of all of this: our children. 
 
At this time, we have made the incredibly difficult decision not to tell our boys about their dad’s terminal diagnosis. 
 
We know there will come a time when they need to understand what is happening, and when that time comes, we will walk through it with them together. But right now, we want to give them the chance to simply be kids. 
 
We want them to laugh, play, go to school, make memories, argue over silly things, wwe (which is daily raising boys) and enjoy the everyday moments that we now realize are anything but ordinary. 
 
We don’t want them carrying a fear or heaviness in their hearts that they aren’t old enough to understand or carry yet. We want them to wake up in the morning thinking about cartoons, sports, toys, and what they're having for dinner..not wondering if their daddy is going to be okay. 
 
That makes asking for help publicly incredibly complicated. 
 
We are so grateful for every person who has offered to support us, but we are asking everyone who shares or contributes to please be mindful of what is posted publicly. Please do not share details of AJ diagnosis in a way that could reach our children. While our children are not on social media themselves, they have friends and classmates who may hear conversations, or repeat things they have heard. We don’t want a social media post or shared fundraiser to accidentally become the way our boys learn about what is happening with their dad. 
 
We are simply trying to protect their innocence for a little while longer while doing everything we can behind the scenes to fight for AJ. 
 
Our biggest priority is giving our boys more time to just be kids—to love their dad, make memories with him, and experience as much normalcy as possible. 
 
If you are able to donate, please know that we are incredibly grateful. I know our goal may seem big, but it isn’t just about one surgery or medical bill. It’s about the unknown. As his wife and the mother of our 4 boys, that uncertainty is terrifying. I don’t want this disease to take more from our children than it already has. They are going to now be growing up with sickness, fear, and uncertainty instead of the simple security every child deserves. 

I can’t stop the disease from taking things from them, but I want to keep it from taking everything. Because this disease is genetic, I honestly can't even wrap my brain around the fear they may face it someday. If that happens, I want them to have every possible opportunity for treatment and care. 

So yes, our goal is big. But we aren’t seeking luxury. We’re trying to create security for a family whose future feels uncertain, give AJ the freedom to fight without worrying about finances, and protect the childhood our boys still have. 
 
If you aren’t able to donate, sharing our GoFundMe means more than you know. Your share could reach someone who is able to help us in a way we never could have imagined. 
 
I know the number we’ve set as our goal is big. And I know that, at first glance, it may seem like a lot to ask for. But the truth is, this number isn’t just about one surgery or one medical bill. 

It’s about the unknown. 

AJ is living with a terminal illness, and there is no neat ending point where the expenses stop or where we can finally say, “Okay, we’ve made it through the hard part.” We don’t know what the future will bring. We don’t know what treatments we may need to pursue, what surgeries may become an option, how much travel will be required, how long AJ may be unable to work, or what care our family may need along the way. 

And as his wife and the mother of our boys, that uncertainty is terrifying. 

I will do whatever I have to do to take care of my family. If that means selling our home, living in a camper, making sacrifices, please remember we will and are doing everything we can, we are just trying not to take so much away from our children when they are already losing so much. We aren't trying to raise enough money to make everything okay, because we know there isn't an amount of money that can make this okay. That's what makes choosing a goal so difficult. 

Maybe enough to pursue the treatment opportunities in front of us without immediately wondering how we're going to pay for them. Enough to help us through AJ's surgery and healing. Enough to soften the impact of lost income and the enormous expenses that come with traveling for care. Enough to allow us to take a breath instead of living every single day in survival mode. Enough to be able to choose to spend the day as a family instead of taking every day of overtime that comes our way. Some days when we wake up, tears hit the floor before our feet do. I don't want to have to choose between pursuing a chance to give AJ more time and keeping a roof over our children's heads. And I don't want the years we have together to be consumed by working more, worrying about money, and trying to figure out what we can sell next. 
 
We don’t know how much time we have. We only know that time has suddenly become the most valuable thing in the world to us. 
 
Thank you for reading our story. Thank you for sharing. Thank you for donating. Thank you for praying, checking on us, loving us, and caring about our family. GoFundMe does take a 2.9% plus $0.30 per donation. If you prefer to avoid these fees, we do have a Zelle or venmo account that goes straight to our bank. 
 
We are fighting for more time and we are going to do everything we can to make every moment of it count. ❤️

Margaret Standley

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The Evans Family battle against Huntingtons Disease

The Evans Family battle against Huntingtons Disease

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