The terrible tale behind a photograph of a 6-year-old child bidding farewell to his dying sister

Over 8,000 people commented on the heartbreaking photo. The parents are now working to raise awareness about this rare disorder.

When the Sooter family learned in November 2016 that their daughter had Diffuse Intrinsic Pontine Glioma (DIPG), a rare tumor that begins in the brainstem, their world was flipped upside down.

Addy would have to live with the developing tumor for a another 18 months until her symptoms worsened.

Matt described his four-year-old daughter’s rapid decline in a Facebook post.

“Addy’s symptoms have worsened over the last day and a half.” She awoke yesterday as her feisty, playful self. While we still visit our baby on occasion, she can no longer eat or swallow without trouble, and she is now sleeping most of the time, so we have admitted her to inpatient care. “She probably doesn’t have much time left,” he remarked on Facebook.

Big brother was reluctant to abandon his sister.

He encouraged any friends and family who wanted to say a final farewell to their darling daughter to contact them in a very emotional and sorrowful message.

Matt also requested prayers for big brother Jackson, who refused to leave his sister’s side.

She died not long after Jackson had bid goodnight to his little sister and told her he loved her.

‘Sweet child enjoyed assisting others.’

The family revealed their daughter’s death just hours later in a post on the Facebook page Hope for Addy Joy – Fighting DIPG.

“She transitioned from this life to the next in the same way she had lived: stubbornly but peacefully, surrounded by family.” “At the end, she was not in any pain,” it said.

“While this is only goodbye for now we miss our baby girl terribly.”

Addy’s tumors, both brain and spine, were donated to scientific study in the “hopes of saving future children from a similar fate.”

“Our sweet girl loved helping people and giving gifts so we thought this would be an excellent way of showing her giving heart,” they stated on their Facebook page.

We’ve all known someone who has been touched by this terrible disease, but it’s especially sad when it impacts youngsters.

Addy, tiny angel, rest in peace.

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