Our daughter Emilie was 9 years old when she was diagnosed with DIPG. What began as headaches during flip-turns while swimming laps, turned into a trip to a neurologist, an MRI, and a whirlwind 13-month fight for her life. Our family became semi-nomadic that year, traveling for treatment at St. Jude in Memphis, UCSF Benioff in San Francisco, and Texas Children’s Hospital in Houston. Unfortunately, as DIPG currently has no cure, Emilie passed away on Halloween night in 2017.
Regardless that the last year of her life had its struggles, her crazy hats helped ease hospital woes, her sparkly rainbow unicorn-loving sense of style established her independent free spirit, and her ability to fight was reinforced through her competitive love for swimming and family game nights. Seemingly ordinary situations, like a trip to a grocery store, inspired spontaneous theme songs sometimes accompanied by impromptu dance routines. Emilie loved creating imaginary scenarios with her brother Alex, which included spy interrogations complete with British accents. Life was never ordinary with our witty, spunky, Hulk-smashing girl, and we miss her every single day.
After her passing, we needed to keep her spirit alive by creating a foundation called The Fight Like Emilie Foundation. After five years of advocacy and aiding other families whose children had cancer, we were introduced to the amazing work of The Cure Starts Now and knew that joining them was a logical next step to making a difference regarding children who are and will be affected by this debilitating illness called DIPG. We see progress in DIPG research through the catalyst of The Cure Starts Now, and those are strides we want to continue by becoming a Cure Starts Now chapter. Most of all, we know that Emilie would be right alongside us because she never backed down from a fight, and neither will we.
About the charity:
The Cure Starts Now is the largest funder of DIPG research in the world and also provides research funding for other brain cancers such as medulloblastoma. Children are diagnosed with cancer every day and The Cure Starts Now is in the forefront of finding and funding a cure. This research focuses on innovative researchers, efficient funding and effective results.