URGENT UPDATE (as of 2 days ago):

Doctors have now told us they are beginning to consider that Jacoby may have a rare form of leukemia.

We don’t have answers yet… but everything has become even more critical.

Hi everyone — I’m Amanda

My husband Brian and I have three kids, and I’m sharing this because our family is in a place I never imagined we would be… and we truly cannot carry this alone anymore.

Some of you may have seen our news interview at the end of October on News8000 — and even then, things already felt heavy.

Since then… it’s gotten so much harder.

Our 16-year-old son, Jacoby was born with rare genetic abnormalities. He also has epilepsy and is on the autism spectrum. From the very beginning, we were told he might never walk or talk — but Jacoby has spent his entire life proving doctors wrong.

He is joy ✨

He is determination

He is light

But over the last 9 months… things have started to change in ways that are impossible to put into words.

One morning, he woke up and his voice was completely different.

Not just “off”… but like someone who had a stroke.

The excitement… the personality… the spark — it just wasn’t the same anymore

And then more started happening…

His body overheats out of nowhere — so severely it causes hallucinations

He struggles with balance, nausea, drooling, and loss of taste

️ Unexplained rashes and symptoms that don’t make sense

It feels like we are watching his body fight itself from the inside out… and we can’t stop it.

Since then, our life has become a nonstop cycle of:

Appointments

Lab work

Specialists

Phone calls

⏳ Waiting… and more waiting

He has had more blood draws than I can count

Multiple MRIs under anesthesia

And more testing ahead — including a spinal tap and metabolic disease testing

We also recently found out he has a blood clotting disorder — something we never saw coming.

And now… as of just 2 days ago, doctors have told us they are beginning to consider the possibility of a rare form of leukemia.

We don’t have answers yet.

We don’t know what this means.

But hearing those words as a parent… it shakes you to your core.

And still… we are waiting.

We hold our breath every time the phone rings

We lie awake at night wondering what comes next

I stay up researching, trying to find anything that might help

We try to prepare for conversations we don’t even know how to have

And while all of this is happening… life doesn’t pause.

We are still parents to our other two children.

Our oldest, Aiden depends fully on us for care due to a rare bone disease in his wrists (Kienböck’s Disease) and is now facing stage 2 progressing into stage 3 kidney disease.

Our middle child, Raven is thankfully doing okay — and we hold onto that tightly.

But the reality is…

We travel 45 minutes each way to appointments

Often 8+ times a month

And through it all…

Bills don’t pause

Groceries don’t pause

⛽ Gas doesn’t pause

We have used everything we had to keep going.

And right now… we are in a critical place.

⚠️ We are extremely behind on bills

We have about 2 weeks to come up with enough to keep our electricity from being shut off

I hate even typing that.

I hate having to ask for help like this.

But we are here.

If you’re able to help, it would mean everything to our family — whether that’s donating or simply sharing our story.

Your support helps us:

Keep up with essential bills

Continue getting Jacoby the care he needs

Stay present as parents during a time that is already overwhelming

We also have medical-related needs right now — including a cooling vest and other items to help regulate Jacoby’s body and keep him comfortable.

Every single act of kindness helps carry us right now.

Because the truth is…

We are exhausted

We are overwhelmed

And we are scared

But Jacoby…

He keeps going

He shows up to every appointment, every test, every needle, every unknown — with a quiet bravery that humbles me to my core.

He is fighting every single day in ways most people will never see.

And we are going to keep fighting right alongside him.

Thank you for taking the time to read this.

Thank you for caring about our boy.

Thank you for helping us not feel so alone.

With gratitude,

Amanda

If you would like to follow Jacoby’s story on Facebook, please look up #JacobyStrong .