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Emerson the Brave

Written by her mom, Ami Hoogendoorn

Emerson is a smart, sassy and loving ray of light. She loves to be outside playing basketball, tennis or softball, riding her bike and swimming in her grandma’s pool. Emerson also likes to draw and make beautiful bracelets and clay figurines. When Emerson isn’t on an adventure with her family or spending time at Grandma’s house, you can often find her playing with her cousins or her friends. She loves her family and friends so much.

Our world was shattered and our lives changed forever, when in June of 2018, Emerson was diagnosed with Diffuse Midline Glioma, after suffering headaches, double vision and extreme tiredness for several months with no relief. We had just celebrated her graduation from kindergarten, and were now afraid she wouldn’t make it until Christmas or her seventh birthday. That summer, Emerson underwent 2 major brain surgeries while in the local children’s hospital for eleven days. Emerson then began the standard 30 radiation and chemo treatments for DMG, where she lost most of her hair, lost weight and stamina.

Our family refused to take the prognosis of DMG as a death sentence and sought out further treatment, no matter what that was, to keep our girl alive. We always prayed she would be the exception to the rule and that she would be a living aid to doctors and researchers to find a cure for this disease. Thankfully, Emerson was able to join a clinical trial of ONC 201 at the University of Michigan’s Mott Children’s Hospital in Ann Arbor Michigan. Luckily, in just a few months, ONC 201 shrunk Emerson’s tumor. For three years now, Emerson has taken ONC 201, and her tumor remains small and stable. She has suffered nearly no side effects and is able to live a nearly normal life as a nine-year-old, she is walking miracle. We have made it our mission to help in any way that we can to find a cure for this disgusting disease. Through it all, Emerson has always been tough, has smiled, continues to think of others before herself and has lived up to her name of Emerson the Brave.  While she is still battling for her life, our family believes there is hope and possibility.