Kids & Art Foundation

My son Amaey, spent 6 of his 9 years of life inside a hospital filled with stress, anxiety and fear. We created art together to lose ourselves in the messiness and control the narrative as the diagnosis and treatment protocol left us feeling helpless. Elevate Prize funding would help us sustain and grow our existing programs. It will also embolden me to develop Amaeyzing Labs, a cross sector collaboration based on our collective lived experiences and focus on 3 main initiatives: Empower, Enrich, and Enhance.

Empower patient families to design their own narrative beginning from diagnosis and throughout their treatment. Enrich hospitals by creating a whole-child supportive program where an artist is employed as a second responder and part of the treatment team. Enhance quality of life with the creation of an onboarding kit (subscription model) with tools and resources that give agency to the patient family. The cancer diagnosis is devastating, especially in pediatrics because things move fast and their little bodies can only take so much trauma through chemo and radiation. I want there to be system change so that the patient journey is integrated with not only the cure but care.

In 2005, my 3-year-old son was diagnosed with and died from it when he was nine. I created art with him and his brother as a need of self-preservation. Little did I know that many families in the waiting room needed the respite too. With my background in design, I paired artists with these kids, 1:1 providing arts based experiences in hospital waiting rooms. Art got me out of bed and helped me put one foot in front of the other after my son died. Kids & Art Foundation grew from that as I knew the organization needed to be there for the families now, not become prescriptive or one more appointment to schedule. That vision expanded into artists creating with patients and siblings in the waiting room, infusion room, and at bedside. Covid-19 forced all art-making online and we sent art supplies to reduce stress on caregivers. We’re developing a progressive web app to create community and connection while they’re in the hospital. Through Amaeyzing Labs 3 main initiatives we will create research backed healing and wellness modalities as well as explore the benefits of the Metaverse and start conversations and cross sector collaborations.

Treatment of pediatric cancer concentrates on eradication of disease with little attention to other overwhelming needs. Focusing on the whole-child, commencing with diagnosis, we address psychosocial, emotional, and developmental needs of the child to achieve greater well-being and quality of life. According to the American Cancer Society, “10,500 children under the age of 15 will be diagnosed with cancer in 2021 and nearly 1,200 are expected to die from it.” Globally, over 300,000 children are diagnosed with cancer annually. Scientists keep searching, doctors keep trying new protocols, and families remain hopeful waiting for a miracle.

Until Covid-19 we created in-person at Lucile Packard Children’s Hospital and UCSF Benioff Children’s Hospitals in the San Francisco Bay Area, but all programming has become virtual. This has allowed us to reach families all over the country. Art-making workshops are designed to reduce stress/anxiety, facilitate peer socialization, and promote typical physical development. We focus on giving agency and control in the moment, building community and connection, and helping our families feel less isolated and fearful. Art is the secret sauce that enables us to make a difference in the lives of the families we work with.

Hospitals believe in the power of art and spend $6M on procuring artwork to enhance the experience of pediatric patients. However, we do not believe that is enough. As the mental health crisis grows, especially for our community that is greatly vulnerable and immunocompromised, we cannot afford to wait any longer to generate change. For nearly 10 years we have advocated for consistent healing through arts programs integrated into the treatment protocol for pediatric patients with cancer and other critical medical conditions and their families, from day one, the diagnosis.

Currently, the only way for us to access cancer patient families is through the complex hospital system. This limits our reach and efficacy. Through design research we are committed to finding ways to work more effectively with hospital child-life staff, pediatric oncology teams, and directly with pediatricians to provide both our onboarding kits and ArtKits to families.  These kits and our programs are trauma informed; we know that providing a creative outlet, encouraging creative problem solving, and building a creative mindset can help overcome depression and reduce the burden on mental health before it becomes unbearable.

Kids & Art is energized by the resilience and hopefulness of the human spirit, especially those facing devastating health issues of their children. The treatment of pediatric illnesses focuses on eradication of disease with little attention to other overwhelming needs, especially their mental health. Therefore, it’s essential that we are here for families ‘now’, when the child is going through treatment, living through side effects, navigating palliative care, or grieving as a bereaved sibling. This makes us intentional in everything we do. Families with children experiencing complex medical conditions often feel isolated and overwhelmed. By providing our new ArtKits program directly to patient families, they are now in charge and can use the arts on their own terms offering a moment of normalcy and joy in their lives.

While conducting design research we learnt that our patients want connection and to learn from artists. This knowledge led to development of a progressive web app. Since our cancer diagnosis in 2005, not much has changed in the way quality of life is integrated in the cure. Amaeyzing Labs is a step in the direction of creating healing and wellness modalities for whole-child supportive programs that are integrated in the treatment protocol.