Ava Decker’s Legacy of Love Lives On in Glimmers Foundation

Ava Decker (courtesy)

March 6, 2011 – May 9, 2024

By the Decker family

Ava Scarlett Decker passed on May 9, 2024, at 13 years of age. Her parents, Vanessa and Shawn, and younger brother, James, live in her light. Ava loved her life, family, and friends. She and her brother had many games they enjoyed playing together. James always laughed his hardest when he heard Ava laughing with him. She and James would also devise pranks against the parents, laughing hysterically or sneaking candy together, mostly Ava sneaking candy for James. She looked out for him, and he is her biggest advocate, often saying, “Let Ava do what she wants.”

Ava did almost everything with her Mom, and Vanessa was Ava’s everything. She loved her Mom in a very special way. Vanessa was her best friend, Mommy, advocate, and caretaker, and Ava trusted her Mom immensely. They would frequently sing together, or Vanessa would do something silly and outlandish like Ava requested. Ava also loved her Dad’s hugs, feeling safe and protected in his arms. She and her dad had many routines, from the Good Mornings to the Good Nights they shared daily, to falling asleep to the sound of Shawn reading her a book with her head on his chest, to playing chase or other games with Dad and James in the house.  There was never any doubt for Ava about how much Mom, James, and Dad loved her.

Ava loved her childhood. From the moment she was born, she was attached to either Mom or Dad. However, she was also very active, so as soon as she could move, she wanted to be put down to explore. She thrived in a Montessori environment at home and then at school. At the age of three, she put her backpack on, stood up straight, and started Montessori school, where she made close friends and precious memories. She collected and played with Calico Critters and fairy gardens. As she grew older, she became increasingly interested in nice things and experiences, such as nice dinners and traveling. She loved food and spent a lot of time researching restaurants to try. She was particularly fond of Ca’ Dario. She was also interested in learning to cook. She wanted to be well-rounded and familiar with many skills but did not need to master most of them as that would limit her time to experience other things.

Ava loved to play and listen to music. Her main instrument was the piano, but she also learned audio engineering and guitar. Typically, she would have jazz or Mozart playing in the background at home. Shortly after Ava learned to read, she blazed through the entire Harry Potter series several times, sitting on the couch in the front room with a light blanket on her lap, reading for hours. She was a talented artist, spending a lot of time drawing, especially anime. She had a passion for ballet and was in several recitals between the ages of three and five. She did Irish dancing, tap and had just started a hip-hop dance class when she was diagnosed. She also enjoyed trapeze and was learning to snowboard.

Ava was a beautiful, smart, funny, mischievous girl with the presence to change the lives of those privileged enough to know her. She was friends with other kids who passed from osteosarcoma whose dying wishes were for their families to meet Ava. During a long hospital stay with poison designed to kill everything, including cancer coursing through her body, she would buy the nurse’s boba or some other treat just because. She played the piano in the teen room one night just for herself, but the whole hospital floor could hear the hope in each note. She met with our representative, Salud Carbajal, to discuss the lack of government funding for osteosarcoma research. She did interviews that sometimes she felt too sick to sit up for or talk during. Even so, with one look into Ava’s eyes, you could feel her wonderful presence. She wants that presence from others and to use her suffering as a reminder of the importance of being present.

Ava also had many furry friends and cherished her animals, including her dogs, chickens, bunnies, and tortoise. Prior to her diagnosis, she liked walking on the beach at Hendry’s in the evening with her dog. Later, in her wheelchair, she loved walks at Elings with her puppy, Scarlett. She was very organized and tidy and always had a plan. She planned to get her first job at Starbucks and attend college at Oxford, where she would study to become a lawyer, fall in love, get married, and have children. She would then buy dinner for her parents when she was 40. She also had a detailed itinerary saved for her dream trip to Tokyo. She loved all things Japanese.

Cancer does not define Ava. Ava fought cancer for about 1.5 years. She refused drugs that would help alleviate pain but take away her mental awareness. She courageously wanted to be present in life. She lived out this presence even in her last moments, telling her family that she loved them and making some of her funny and adorable expressions.  During her cancer treatments, her dream to attend Riviera Ridge came true. She made incredible friends there who were so pivotal in bringing her moments of joy and hope, including her girlfriends, Abby and Maya, and Head of School, Chris Broderick. Ava hated it when her plans would change. But she became very used to it as cancer took away more and more.

Cancer cut Ava’s life short, but Cancer can no longer hurt Ava and cannot now or ever take away who Ava is and her light. Despite pain, discomfort, and trauma from cancer, Ava wants better for other kids with cancer. She wants her suffering to be known and used to increase funding for research for better treatment with fewer side effects, eradicate pediatric cancers with an emphasis on sarcomas, and give affected kids their lives back. She also wants increased awareness.

When Ava’s body died, cancer died with it. Ava did not. We will live in her light, and we invite you to join us. You are the love of our lives, Ava. Words are not capable of describing how much we love you. We are honored to be your parents and eternally grateful for every moment we had. The night of her passing, around an hour after she had passed, as we said goodbye to her in the dimly lit room, an unlit bulb on the bedroom ceiling sparked and flashed a brighter light than the bulbs are rated for, momentarily illuminating the entire room. The bulb then stayed lit at a normal brightness. The following night, northern lights were visible in the Santa Barbara sky. We light two candles each day for Ava. Ava’s Mom, Vanessa, is leading the charge to fulfill Ava’s wish to end childhood cancer. Ava’s legacy foundation is Glimmers Childhood Cancer Foundation www.GlimmersFoundation.org

Ava, we love you.

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  1. What an amazing human Ava sounds like, such a special bright light! I cannot fathom the depth of loss that the family feels, and the pain of witnessing her going through that. Thank you for sharing a glimpse of her with us and I hope that all of the love that she felt for you flows over your hearts always.

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