4-Year-Old Girl Dies Hours After Heartbreaking Photo With Brother

ROGERS, AR — Addy Joy Sooter was just like many other 4-year-old girls. She loved princesses and the movie "Frozen." She loved playing with her dolls. She was also quite friendly. Wherever she went, she gave people — sometimes even random strangers at Walmart — drawings and paintings that she had made.

But her best friend — her "partner in crime," her father, Matt Sooter, says — was Jackson, her 6-year-old brother.

They got on each other's nerves, for sure. But on many days, they did everything together.

"They played together. They helped each other out," Sooter, a 29-year-old youth pastor, tells Patch. Most of all, she loved playing hide-and-go seek with Jackson.

"When she was younger, she would go find him and then she would go hide in whatever spot she had found him," says Sooter. "She learned it from him."

So it's no surprise that when she fell ill, Jackson was there for her until the very end. And a photo capturing the siblings' last moment together has touched the hearts of thousands.

In October 2016, Sooter and his family visited a small theme park near Branson, Missouri. His parents were there too. While walking at the park, Sooter and his mother noticed Addy's gait was "a little off."

"It was hard to really see what it was; she just wasn't walking quite normally," he says. "One leg, she was having to swing it around instead of just pick it up and go forward. But it was just real slight starting out."

He didn't think anything of it at the time. Addy had just grown a few inches over three or four months. It was probably just due to a growth spurt or something, he says. It was barely even noticeable.

"It's one of those things, if it weren't your kid, you'd never see it," he says.

But it was a sign of something much, much worse. A sinister disease from which just 10 percent of children survive two years following a diagnosis. Less than 1 percent survive five years.

Sooter and his wife, Chandra, 30, decided to keep an eye on the symptom to see if it worsened. Over the next couple weeks, it did. At one point Addy had trouble walking — she needed to hold someone's hand or brace herself against a wall just to walk to her bedroom. Her balance was off, too.

At a wellness checkup, a doctor referred Addy to Arkansas Children's Hospital to get an MRI. After about 24 hours at the hospital, a team of doctors stood outside their room. Sooter and his wife braced for the worst.

"You pretty much figure that when there's six or eight doctors standing outside your room having a quiet conversation and trying to figure out how they're going to break the news to you, that it's not good," he says. "So they come in wearing pretty grim faces and pulled it up on a computer and started saying we found a mass on her brain stem."

The doctors said Addy had a disease known as diffuse intrinsic pontine glioma. DIPG. There wasn't much they could do for her.

"We were pretty crushed," Sooter tells Patch. "You never really think that's actually going to happen to your kid. And then when it does, it's just overwhelming."

About 10 percent to 20 percent of all childhood brain tumors are DIPG or brainstem gliomas, says the nonprofit St. Jude Children's Research Hospital. They are most common in kids between 5 and 10 years old.

Addy was given just months to live. She received 33 radiation treatments over three months and the tumor shrank more than 50 percent. She even regained her ability to walk — and run — for a short time.

But by July 2017, the tumor started to expand again.

Desperate for options, the family turned to an experimental treatment in Mexico. The girl received treatments for nearly a year. But in recent weeks, her health started failing. Her balance was off. She needed help walking. Part of her face was paralyzed.

With hope dwindling, the family posted an update on the Hope for Addy Joy Facebook page: "Our doctors here have no options for us, and it seems the treatment in Mexico is no longer working," wrote Sooter. “We’re out of options. We are shattered. Everything within us screams to keep fighting, but we’ve run out of weapons with which to do so."

On the night of June 2, Sooter says he thinks Jackson knew the end was near for his best friend.

"I think he knew more than we did, if that makes any sense," says Sooter.

He gave his sister one last hug and kiss and said "I love you Sissie," before falling asleep in the hospice room, Sooter says. A photo of the touching moment showed Jackson stroking his little sister's head as she holds his arm. Sooter posted the photo on Facebook. In an accompanying caption, he wrote: "A little boy should not have to say goodbye to his partner in crime, his play mate, his best friend, his little sister. This isn’t how it’s supposed to be. But this is the broken world we live in."

Addy died hours later, the morning of June 3.

No matter how hard his parents tried, they couldn't wake Jackson.

"We tried. We couldn't wake him up when we knew she was getting ready to go. We tried a couple of times. He was fast asleep," says Sooter.

He adds: "I think somehow, some way he knew better than we did because we didn't expect it to be that night. And in a way I think they both kind of knew."

A service celebrating her life was held on Saturday in Arkansas. Sooter says he hopes Addy's story reaches who it needs to reach and helps who it needs to help. He asks that people consider donating to the Michael Mosier Defeat DIPG Foundation.

Photo credit: Matt Sooter, used with Permission