About Liberty Maya Arnold-Simon

Our sweet girl

Liberty was born on August 22, 2010 at 1:01 pm with eyes wide open. She lifted her head on her second day of life. She was our “little love.”

Liberty was an incredibly talented and active, athletic, and creative child. She had a great love and affinity for space, art, math, language, dance, and swimming underwater. She loved for rainbows (also her favorite color) and especially her little sister Verity. We called her a “whirling dervish.”

Liberty was our first-born. She was an exceptional artist who drew arms like DaVinci and colored with multiple crayons at once, could do quantitative reasoning apps for elementary schoolers at the age of two, and could tell you all about the planets; she was our water baby, tiny dancer, little scientist, and fantastic big sister.

Stars were her favorite shape and giraffes were her favorite zoo animal.

Liberty had three categories for people -- hearts (when she would show you her hands in a heart shape), loves, and shits. (Seriously. We don’t know where she learned context for that.)

Liberty loved life more than anyone we’ve ever known. She was looking forward to starting kindergarten and Girl Scouts. When she grew up she wanted to be a lifeguard at our local pool before becoming a space midwife or astronaut doctor and having four children.

Liberty always said she would reach the stars.

On August 19, 2015, Liberty choked on a pretzel. On the 20th, her eyes crossed. By her 5th birthday and her party 2 days later, she had problems walking and said it felt like her “legs were coming out from under her.” Liberty was taken to UMass Worcester on August 25th and over a period of the next two days was diagnosed with DIPG.

Unfortunately Liberty continued to get worse and within two weeks of diagnosis had completely stopped being able to walk, talk, or swallow. She continued losing her functionality until she was basically “locked in” to herself within a month, mostly unable to move.

As with all children fighting DIPG, Liberty remained completely cognitively aware the whole time, feeling and thinking as if everything was normal.

Liberty communicated with us through one working eye that could only move up and down. Liberty fought hard to manage the occasional improvement that allowed her to nod and shake her head, squeeze hands, hold a paintbrush and move it slightly, and similar. She also participated in a clinical trial from Boston Children’s Hospital / Dana Farber Cancer Institute.

Radiation did not work. Nothing we tried worked, and Liberty never came back to us. Liberty had no “honeymoon period”.

Others have said that Liberty had the “worst of the worst of the worst DIPG.”

Liberty died in the very early morning of December 20, 2015 at the age of 5 years, 3 months, and 28 days.

She was buried at Reservoir Pines cemetery in Clinton on December 23, 2015 next to the plots of her parents and grandparents.

For Liberty's 11th birthday in August, the only thing we want is donations to the Love for Liberty Arnold-Simon DIPG Foundation to help bereaved pediatric cancer families as well as our local community. Every penny will go directly to funding the foundation’s unique programs. Donate through our fundraiser on Facbook, or you can donate to Love for Liberty Arnold-Simon DIPG Foundation through our donate page. Thanks for your support!