A Louisville family has documented their heartbreaking three year battle with a rare and curable form of pediatric cancer.

They say they are sharing their story to raise awareness and bring hope to others facing the same very difficult journey.

More in today's medical news.

Kyler was the most confident, brave kid that I ever met.

He just when he wanted to love something like the color pink, he didn't care what anybody thought about it.

And even if you would tell him something like, I think you might get picked on or teased or joked with.

And he's like, I don't care.

Kyler Buckner loved video games, telling jokes and spending time outside with his family.

His mom, Kristen, describes him as brave, a trait that would serve him well as his health began to decline.

Kyler was starting to have headaches in the third grade, so I kept an eye on him and I thought maybe he was just growing into his body and his something because his brother had started getting headaches about the same age.

I took him to the doctor because his headaches hadn't really they had consistently stayed the same.

She said, Has his face always looked uneven?

Like one side looked a little different than the other side.

And I said, Well, I mean, he's looked like that for a little while.

I just thought it was a part of his growing.

The neurological tests taken that day showed nothing concerning.

However, Kyler symptoms only got worse as time went on.

During a family camping trip, his personality started to change and his balance got so bad that he couldn't walk.

Kristen took him straight to the hospital, thinking he'd had a stroke.

They said, We're going to take them back immediately.

Took them back, did an MRI, did a CT scan, and said he had a mass and bleeding on the brain.

So at this point, we didn't know what was going on.

The next days, when he was diagnosed with Dipg, which is a fuze intrinsic pontine glioma, it's like a really long type of tumor.

It's on your brain stem.

It's terminal and diagnosis.

There is absolutely no cure.

For our family, that meant we had to basically go home, make memories.

Tyler would go through 35 rounds of radiation and four rounds of trial treatments in California, but his symptoms continued to worsen.

By February 20, 20, he could no longer see, eat or walk on his own.

There was nothing else we could do because even radiation wouldn't improve his symptoms.

It would only basically keep him from possibly worsening.

And then in March, he passed away and he was nine years old.

Kristen says a lack of resources and information on Dipg made her family's battle against the disease even more difficult.

She didn't want other families to experience the same challenge.

So she asked Kayla's uncle, a filmmaker, to help her create a documentary.

The movie is called 499 Days because that's how many that's how long we had with him from the day of diagnosis to the day that he ultimately passed.

And, you know, for the last he passed in March of 2021.

And really, we reeled in all of the sadness and grief that came from that.

Exhaled a little bit, and I think it was about a year later, we really started putting together a plan for the first actual interviews.

And who were we going to talk to and where were we going to go?

And what was the best approach for telling his story.

But but, you know, telling it through his lens.

But ultimately, like with the goal of moving the needle on pediatric cancer care.

Treatment options, funding and research, all of that sort of things.

Kristen says childhood cancer is deeply underfunded.

According to the National Pediatric Cancer Foundation, only 4% of government funding for cancer research is directed towards treating childhood cancers.

We were told that we would possibly be one of three families that year, that we're told that our child had dipg at that hospital that only 350 children ish in the United States would be diagnosed with Dipg in a year.

So incredibly rare.

Kristen and Jami hope this documentary will make more people aware of this rare disease and be a source of hope for those families who are affected by it.

Kristen has got this wonderful quote that she talks about.

It's something I'll paraphrase something along the lines of, you know, remember your struggle and tell your story because one day it'll become someone else's survival guide or telling Kahlo's story.

But we're also trying to create this resource, this survival guide for folks to know there's community out there.

People are working on this.

You can help with this.

As a mom, you know, you never expect to lose your child.

You never expect to lose your child to something as devastating as a terminal brain tumor or cancer.

And I'm hoping that I get to have my son live on forever for other people to get to meet him.

And even though I don't get to watch him grow up, I don't get to have more memories with him.

These memories that I do have are everything to me.

And I want other people to know how wonderful he was and how beautiful the child he was and how kind and funny and just just wonderful a human being that he was because he was just the most beautiful, wonderful kindness, bravest kid I've ever met.

Our thanks to Mackenzie Spink for that story.

And you can find out more about the documentary entitled 499 Days by going online to Louisville Film Society dot org.