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Our kids inspire us to fight to defeat DIPG.

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Superhero Sophia

Superhero Sophia Ann Lowrey was an amazing little girl who was incredibly smart, artistic, and curious. She loved My Little Pony, watching YouTube, creating things and making everyone smile.

Sophia was born 6 weeks early at 4lbs 10oz. Just a few days old she took on Necrotizing enterocolitis (NEC) which is a devastating disease that affects mostly the intestines of premature infants. The wall of the intestine is invaded by bacteria, which cause local infection and inflammation that can ultimately destroy the wall of the bowel (intestine). She was given 10% odds of avoiding surgery and would have lifelong complications. Well, she crushed those odds and life calmly moved forward with little worries.

Fast forward 6  years . . .

We started to see a few things that were off with Sophia. First she was acting tired/groggy and then she started to have speech and breathing issues followed by a droop in the right side of her face. Shortly after, she was hardly able to walk and couldn’t use her right arm. She went from an appointment with her primary care provider to emergency services in Springfield where she was then taken by ambulance to Children’s Mercy in Kansas City, MO, after an MRI revealed a shadow on her brain stem believed to be a tumor. Several tests and tears later, her oncology team diagnosed her with Diffuse Intrinsic Pontine Glioma (DIPG) in August 2017.  DIPG is a devastating, aggressive brain tumor. It arises in the pons, a region of the brainstem involved in critical body functions. Treatment options are very limited and surgery is not possible. We were told Sophia might have around 90 days left but nothing is ever definite with DIPG other than your child will die. After a few day stay they sent us home with steroids, planned radiation treatments and chemo, all meant to improve her quality of life.  These are the only real treatments offered by oncologists and they bring on a whole new set of problems during a time of uncertainty. where every moment of quality time these kids have left matters first and foremost. They said Sophia needed a shunt line put in from the effects of the radiation treatments on her brain.  The steroids needed to keep the tumor swelling down also caused her to gain weight faster than anyone ever should. Taking her mobility as if in a race with the tumors in her spine to take her childhood away. She fought harder and braver letting nothing keep her from moving forward with a smile during her short but standard 9 month fight.  She gained her wings on Mothers Day, May 13, 2018.

Read Superhero Sophia’s Story on Facebook.

Submitted by Sophia’s dada, Jason Lowrey.

What is DIPG?

DIPG is a devastating and aggressive brain tumor typically found in children.

What is ChadTough Defeat DIPG?

Learn about our founders, mission, and impact.