Family shares heartbreaking photo of boy comforting his dying little sister to raise awareness for rare disease

ROGERS (KSFM) — The family who posted a heartbreaking photo being shared around the world, hope their story will draw attention to a rare form of cancer.

Matt Sooter snapped a picture of his 4-year-old daughter Adalynn "Addy" and his son Jackson, 6, as the two embraced while Addy lay in a hospital bed.

"He was getting ready to go to bed, and she was getting tired again, getting ready to fall asleep," said Matt Sooter who took the picture.

"Matt took it just as something we feel [Jackson] would want later down the road, when he doesn't remember everything about it," Chandra Sooter added.

"A little boy should not have to say goodbye to his partner in crime, his play mate, his best friend, his little sister," the family wrote. (Photo: Facebook)

The couple spoke to 5NEWS about the photo and their 19-month journey that got them where they are today.

Their daughter Addy was diagnosed with a rare brain tumor called Diffuse intrinsic pontine glioma (DIPG) in November 2016.

"We started noticing she would stumble more and things like that, and we're like 'This is odd. Our son didn't experience this,'" Chandra Sooter said.

A trip to the doctor would reveal just how serious the problem was.

The tumor found on Addy's brain was terminal, and there wasn't much doctors could do.

"They told us that at most she would have about nine months, and that was with radiation," said Matt Sooter. "Without radiation, she could have a couple of months to a couple of weeks."

They chose to move forward with treatment, and throughout the next year, the Sooter's where in and out of hospitals.

"With a little bit of conviencing, she was always willing to go and to do another treatment," said Matt Sooter. "But as soon as treatment was done, she was ready to get home and keep playing with her 'Bubba.'"

The brother and sister shared a strong bond.

5NEWS was there when Make-A-Wish granted Addy and her family a trip to Disney World. During the trip, the Sooters say Addy was able to meet Elsa and Anna from Disney's Frozen.

Memories like these are what will keep the Sooter family going.

"She may be gone here from Earth, but she will always be with our family, and with her friends that she touched," said Chandra Sooter.

Addy’s family asked that, instead of giving flowers, people donate to the Michael Mosier Defeat DIPG FoundationArkansas Children’s Hospital, or Ronald McDonald House Charities of Arkansas.

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