Matt and Chandra Sooter had always envisioned what their perfect family would look like. They had always wanted three kids and, in the summer of 2016, they were two-thirds of the way toward making that a reality.
Four-year-old Jackson and 2-year-old Addy were best friends and partners in crime and the Sooters were talking about adding a third sibling to their little posse soon.
But then, in an instant, everything changed.
The family had spent the day at an amusement park when the kids’ grandmother noticed Addy was walking funny. At first, the family wrote it off to her being tired after a long day, but as the days and weeks went by, that little limp turned into big stumbles and falls.
Concerned, Matt and Chandra took her in for an MRI, and that’s where their worst fear was confirmed.
Addy was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a rare, aggressive – and terminal – brain tumor that affects young children. The cancer has a less than 1-percent survival rate.
“Life, and all other plans, immediately went on pause,” Matt said, “including those for a new addition to the family.”
Over the coming months, the family rode a heartbreaking rollercoaster of treatments, regression, and progression. Addy was a fighter and there were times when it looked like the treatment was working, but inevitably the cancer would come back and spread further.
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