In the final hours of his little sister Addy's life, Jackson Sooter, 6, was right there to comfort her.
Addy had diffuse intrinsic pontine glioma (DIPG), a rare tumor in the brain stem and spinal cord. Jackson's parents Matt and Chandra Sooter posted his goodbye in a heartbreaking photo.
"A little boy should not have to say goodbye to his partner in crime, his play mate, his best friend, his little sister,'' Matt wrote. "This isn’t how it’s supposed to be. But this is the broken world we live in.
"Pray for Jackson. He doesn’t want to leave her side and we won’t make him."
"I originally posted it so that friends and family would know where we were in the process with Addy and so they could see the tender moment between a brother and sister,'' Matt, who's from Springdale, Arkansas, told TODAY in an email. "We're a bit overwhelmed by how many people are being touched by the photo of Jackson and Addy."
Addy died on June 3, just over two hours after Matt posted the photo on Facebook.
"At 1:04 a.m. our sweet little girl received the miraculous healing that we’ve all been praying for for so long and ran into the arms of Jesus,'' Matt wrote on Facebook. "She passed from this life to the next just as she had lived: stubbornly but also peacefully, and surrounded by family. She wasn’t in any pain at the end."
Matt is hoping Addy's story will bring more attention to DIPG and pediatric cancers.
About 10 to 20 percent of all childhood brain tumors are DIPG or brainstem gliomas and the survival rate is very low, according to St. Jude Children's Research Hospital.
"She, and many others fighting DIPG, deserved more hope than what the medical systems of the world were able to provide her,'' Matt said.
The family also wants people to know their wonderful daughter.
"Addy was a sweet little girl who loved caring for people,'' he said. "She loved to draw and color and would often take her creations with her wherever she went so she could give them to others and bring a little light into their days."
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