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Our Familes / Family Stories

The Bragdon Family

Maya was a very sweet, funny, and happy little girl. She loved playing with her twin sister Abby, watching Sponge Bob, and spending time with family. While homeschooling during the pandemic, Maya’s mom, Kim, noticed that her hand was shaking while using a mouse. A few days later, she lost her balance and fell, which seemed odd. Maya had recently had major dental surgery and her parents wondered if her new symptoms were at all related; however the MRI showed the worst possible news–an inoperable brain tumor called DIPG (Diffuse Intrinsic Pontine Glioma).

On December 4, 2020, Maya’s parents were told that DIPG was a terminal diagnosis and that the only treatment was radiation, which is considered palliative. Kim recalls how she felt that day, “There are no words when a doctor tells you that your child will die and there is nothing we can do to save her. How can I, as her mother, not do ANYTHING to help my baby? Until this day, I still have no words for that moment but it is burned into my memory forever.”

After diagnosis, Maya underwent 30 rounds of radiation. The treatment was considered successful as the tumor shrunk and Maya regained functionality. After a very significant battle with their health insurance company, Maya also began an oral chemotherapy trial called ONC201. This trial required the Bragdons to travel from Massachusetts to New York City on a monthly basis from February through June of 2021. Maya’s symptoms remained relatively stable until July 2021, when they returned with a vengeance as her tumor progressed. Maya underwent a second round of radiation, which helped her regain some mobility, but she sadly continued to decline. Maya passed away peacefully in her sleep on January 9, 2022 at the age of 7.5.

The Bragdon’s attended a Bereavement retreat in June 2023. Kim says that the friendships she made through Rett’s Roost has made them feel so loved and she also really appreciates how welcomed her family felt by Jim and Deana at the retreat. Kim’s advice for other parents facing a terminal diagnosis is to spend as much time with your child making them happy, and make sure their last days are filled with joyful moments and love.