The background to the tragic photo of a young boy, 6, saying goodbye to his dying sister

A photograph of a 6-year-old boy saying goodnight to his 4-year-old sister for the last time has been capturing hearts all around the world. The image was taken by Matt Sooter from Arkansas, whose daughter, Adalynn “Addy”, was diagnosed with a rare type of cancer.

Sooter wrote on Facebook, “A little boy should not have to say goodbye to his partner in crime, his play mate, his best friend, his little sister.” The picture has received over 8,000 reactions, and the family hopes to raise awareness of this disease.

The Sooter family’s world changed when they were informed in November 2016 that their daughter had Diffuse Intrinsic Pontine Glioma (DIPG), a rare tumor that forms in the brainstem. Adalynn had to live with the growing tumor for 18 months until her symptoms became worse.

In a Facebook post, Sooter described how his daughter’s condition had rapidly deteriorated, and how she could no longer eat or swallow without difficulty. She was sleeping most of the time, and they had admitted her to inpatient care.

In an emotional and heartbreaking post, Sooter invited friends and relatives to say their final farewells to his daughter. He also asked followers to pray for his son Jackson, who didn’t want to leave his sister’s side. Shortly after Jackson said goodnight to his little sister and told her he loved her, Adalynn passed away.

The family announced her passing on the Facebook page Hope for Addy Joy – Fighting DIPG, just hours later. They revealed that Adalynn had passed away surrounded by family, peacefully, and without any pain. “While this is only goodbye for now, we miss our baby girl terribly,” they wrote.

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The family donated Adalynn’s tumors, both brain and spine, to scientific research, in 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 wrote in a Facebook post.