#Love4Liberty: 5-Year-Old Victim of DIPG, Never to be Forgotten

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Early in August of 2015, Liberty Maya Arnold-Simon was excitedly preparing for her first real year of school. She was looking forward to going to Girl Scout meetings and celebrating her fifth birthday on August 22nd. In a cruel, unpredictable twist of fate, Liberty fell terribly ill only a few days after her birthday was celebrated. After being taken to the hospital by her extremely concerned parents, Sara Melissa Arnold and Bill Simon, and a round of testing, sweet Liberty received a horrifying diagnosis: a brain stem tumor, Diffuse Intrinsic Pontine Glioma, also called DIPG, which has a very grim prognosis.

Without radiation therapy, doctors predicted she wouldn’t survive six months. Desperate to give her any chance they could, her parents immediately began the recommended medical regimen. On September 5th, Liberty was operated on to have a port installed, allowing her to receive necessary, possibly life-extending treatments without constantly being pricked and poked by needles. On September 8th, she began her radiation therapy. Although doctors were very blunt about Liberty’s chances of remission, her family, especially her mother, Sara Arnold, desperately clung to the hope that Liberty could get better or at least have a few extra weeks or months with her family after her treatment.

Unfortunately, Liberty’s DIPG proved incredibly aggressive, and between the tumor and her treatments, her mobility was substantially compromised early in September. It soon became apparent that she had developed locked-in syndrome, a medical condition that results from damage to the brain stem, wherein the body and face are essentially paralyzed other than limited eye movement, but the individual remains conscious. By the second week of September, she was struggling to vocalize things and move her increasingly stiff body. By the end of the month, she couldn’t really move or speak any more, despite her visible efforts to continue interacting with her loved ones. Her family invested in a special stroller, large enough for a full-sized five-year-old, to ensure Liberty continued to have a very high quality of life.

Before her unexpected and sudden diagnosis with DIPG, Liberty was a brilliant, lively child who loved her life and her family, especially her little sister, Verity. Her favorite color was red (and rainbows). She loved Hello Kitty, giraffes, Chinese food, and selfies and was incredibly outgoing and vivacious, making new friends everywhere she went. She told her mother that she wanted to be “a lifeguard at the state pool before becoming a space midwife” when she grew up. It was nearly impossible for her parents to imagine a future where their daughter would never get a chance to grow up, let alone never laugh or run or sing again, but that was the prognosis doctors offered this young family.

In honor of her zest for life and her ongoing consciousness, Liberty’s family made every effort they could to help her experience all the things she had been looking forward to about kindergarten. She stayed at home with her parents and little sister Verity for as much of her final months as she was able. She was taken to school to visit with her classmates, and she attended Girl Scout meetings with her Daisy troop. She had a special Hello Kitty party. She received music therapy and water therapy, allowing her to enjoy two of the things that made her happiest in life even when she was unable to communicate with anyone. She was always surrounded by those who loved her, and they made every effort to ensure her last months were full of beauty and joy, even as their hearts were breaking for her.

The local community also rose up to help the family in their time of need. There were fundraisers organized, and the field hockey team at the local middle school had gray uniform tops made this year in support of Liberty and to raise awareness about brain cancer. A local art gallery sold a print with proceeds to benefit Liberty’s family. The school where she would have attended kindergarten allowed her to visit and come to class, and to participate in their Halloween parade. Her classmates and playmates came to visit her, at home and out in the sunshine, where Liberty spent much of her last months on this planet.

Liberty passed away on December 20th, 2015, at home and surrounded by those who loved her best. Her family sat shiva for her, a traditional in-home grieving period, wherein others can come and mourn with the family of the beloved deceased. Her coffin was decorated beautifully by her friends and classmates before she was interred at her final resting place at Reservoir Pines Cemetery on December 23rd, 2015.

There are precious few experiences that are more emotionally devastating than the loss of a small child. Liberty’s family is still struggling on a daily basis to adjust to life without their beloved daughter and older sister. At the time of publication, only five weeks have passed since Liberty’s final transition. Her mother and sister still visit her grave daily. They are also dealing with ongoing Department of Human Services involvement with their family. They need all the support they can get. Currently, they have an active MealTrain, which allows people in the nearby region in Massachusetts to donate prepared meals to the family during their period of grief. They also have an Indiegogo page  where those who are able can donate a few dollars toward their family’s expenses, which mounted quickly during Liberty’s illness. Her family is also working to create a foundation and fund for DIPG awareness and support in Liberty’s memory. Follow their efforts on social media under #love4liberty or by following the Love for Liberty Facebook page.

Liberty was a bright light in a world too dark for her beautiful soul. Her brief but moving struggle with cancer was but one chapter of her short but amazing life. During her five years on this planet, she touched the hearts and minds of thousands, and she will continue to do so for many years to come.

“Unable are the loved to die, for love is immortality.” — Emily Dickinson

Liberty’s body may be gone, but her beautiful spirit and memory will live on forever. Remember Liberty’s battle, and advocate for change in local cannabis and parenting laws where you live in her honor. Remember Liberty’s boundless heart and spread awareness of DIPG and other childhood cancers, which need to be eradicated. Light a red candle for this little angel, and help keep her alive in your heart.