Hope for Addy Joy - Fighting DIPG/Facebook
When Addy Joy was 2-years-old, her grandma first noticed what seemed to be a hitch in the toddler's step. At the time, nobody knew that it was because she was starting the battle of her life. The seemingly minor observation in 2016 quickly snowballed into an aggressive brain cancer diagnosis as Addy lost the ability to walk without assistance or use her hands without them trembling. Despite doctors telling her family on two occasions just to "go home and make memories," Addy continued to fight with her devoted brother and parents by her side until her little body couldn't take it anymore.
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Addy was diagnosed with Diffuse Intrinsic Pontine Glioma, an aggressive type of tumor that starts in the brain stem. According to St. Jude Children's Research Hospital, 10 percent to 20 percent of all childhood brain tumors are DIPG or brain stem gliomas and unfortunately, the survival rate is very low.
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Despite being told to "go home and make memories" Addy's family refused to give up and they went to Mexico for an experimental treatment. They've been traveling to Mexico every three to six weeks for treatment since summer 2017 but on May 7, Addy's family received devastating news. As some of her symptoms started returning, doctors discovered that the cancer had spread down her spine and there was nothing more that could be done.
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Before Addy passed away on June 3, her 6-year-old brother Jackson, refused to leave her side. "A little boy should not have to say goodbye to his partner in crime, his playmate, his best friend, his little sister," Addy's dad, Matt Sooter, wrote on Facebook. "This isn’t how it’s supposed to be. But this is the broken world we live in."
During her last day, Addy couldn't eat and mostly slept but her big brother was cherishing every last moment with Addy. "Pray for Jackson. He doesn’t want to leave her side and we won’t make him," Sooter wrote. "Pray for us. That we have the right words and can make the necessary arrangements in time."
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During Addy's last few weeks before going into hospice, her family focused on "living it up" together. They were able to enjoy some time at the beach before Addy lost her mobility and they're now taking comfort in the fact that she wasn't in great pain at the end. "This all happened so much faster than we expected, but that in itself is a blessing because she suffered so little at the end," he wrote. "While this is only goodbye for now we miss our baby girl terribly. Always remember: God is in this situation, He’s up to something, and He’s up to something GOOD."
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"My hope is that this story would inspire you to take action for those who cannot take action for themselves. Our children are our future and yet they only receive four percent of cancer research funding," he shared with Love What Matters. "Four percent for all of childhood cancers. And of that four percent, only about four percent of that goes toward research for DIPG patients. The average adult cancer victim loses about 10-15 years of their life to cancer. The average child cancer victim loses around 75 years of life. Our children deserve more."
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