Our Warriors Who Inspire Us

Gracie was a happy, healthy and vivacious ray of sunshine. She was just as beautiful on the inside as she was on the outside. She loved her family and friends, arts and crafts, school, dancing, gymnastics, Disney princesses, and all things pink.  She captured the hearts of everyone she met and could light up a room with just her smile.

In the fall of 2017, when Gracie was 5-years-old, she started experiencing weakening of her facial muscles that appeared as a half-smile and wink, along with balance and vision issues. Prior to this, she had never had any health-related issues, so she was taken to the doctor for an MRI on November 30, 2017. The very next day, Gracie’s parents got a call telling them to take her to the emergency room as soon as possible because the MRI showed a clustered mass in her brainstem. Following a biopsy, Gracie was initially diagnosed with a glioblastoma with molecular features of a high-grade glioma and underwent a debulking surgery.

After Gracie was given a 9-month prognosis, her parents knew they had to do more than the standard of care radiation, so they began seeking out experimental therapies. In doing so, they met with pediatric brain tumor specialists around the country, which subsequently led to Gracie’s diagnosis being changed to diffuse intrinsic pontine glioma (DIPG), an aggressive and inoperable form of brain cancer. She began treatment right away, and participated in two clinical trials funded by The Cure Starts Now. Throughout treatment, Gracie tried her best to continue doing the things she loved, no matter how difficult they became. She insisted on going to school for as long as possible, even when she was bound to a wheelchair. Painting became a form of creative therapy for her, as she created beautiful pieces of artwork.

Following a courageous 14½-month battle, Gracie passed away at the age of 6 on February 18, 2019. From beginning to end, she was the epitome of grace. Her head was always held high and she never gave up. She was positive right up to the very end of her life.

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