Artist Kilusan Bautista appeals for support for daughter with CHARGE Syndrome genetic condition

Adorable dad-and-daughter moment. Instagram photos

Multimedia artist, writer, and performer Kilusan Bautista has opened a GoFundMe campaign as he shares the story of his daughter Phoenix who has developed CHARGE Syndrome, a genetic condition that affects multiple organ systems, according to the National Organization for Rare Disorders. In the last four years, Kilusan has stopped creating, writing, and performing as he and his wife immersed themselves in their child’s medical care amid a crippling global pandemic. He is now back with a storytelling project titled “PXSO: PhoeniX rising in ScorpiO” for his Master of Fine Arts thesis at the City University of New York, Brooklyn College centered around his life as a father of a child with a disability.  

Kilusan has performed coast to coast sharing with his audiences stories about his growth as an interdisciplinary artist and his contributions to cross-cultural solidarity. He was a recipient of the Outstanding Artist Award from the Filipino American National Historical Society of Metro New York. He was awarded the Congressional Community Service Award’s Kabataan Komemorative in 2006 by California Senator Tom Lantos, and has won a writing contest sponsored by the California Council for the Humanities and New America Media. “PXSO: PhoeniX rising in ScorpiO” is his anthem to his daughter.

Dear Beloved Community,

I hope this message finds you safe and in good health. Thank you for considering to be a donor/partner for my new artistic project “PXSO : PhoeniX rising in ScorpiO.” I am grounded and accountable to the creation of stories that represent the hopes, dreams, struggles and imagination of my family, culture and community. PXSO is a developing artistic project associated with my Masters in Fine Arts thesis at the City University of New York, Brooklyn College – Performance and Interactive Media Arts program.

PXSO is a two-part artistic project that includes an immersive multimedia theater experience in the late Fall of 2021. For the past year I have been creatively workshopping stories about my daughter Phoenix and her life experiences with Charge Syndrome and Deafblindness. Despite theatrical stages and college performance studios being shut down for the past year, I have been developing new tools of storytelling that I am excited to present in PXSO such as video and visual projections, audio engineering, interactive technology (Max MSP), and augmented reality. I began writing PXSO in May of 2020, in the middle of the New York City quarantine and as I entered my MFA program in the Fall of 2020, I immersed myself in the virtual world with the ambition of developing PXSO. Honestly, working on PXSO is helping me get through the current global pandemic and offer an authentic piece of my soul to the world. My daughter Phoenix inspires me every day. She is my hero and I am honored to share her story through PXSO.

Kilusan is an MFA candidate at Brooklyn College. ‘PXSO: PhoeniX rising in ScorpiO’ is his thesis project.

The second part of PXSO is the formation of a Fathers With Disabled Children support group that will begin meeting virtually and eventually in-person. The aim of this support group is to provide a safe and artistic space where fathers with disabled children can share stories, perspectives, resources and engage in a creative process to raise awareness about Disability Rights. In the Spring of 2022, I plan to honor these fathers, their stories and artistic expressions in an outdoor celebration in the New York City area. In addition to the support from PIMA, my MFA program at Brooklyn College, I am blessed to be a new Fellow with Social Practice, CUNY’s exciting new Mellon Foundation-funded initiative. Both spaces will support the development and public presentations of PXSO for the 2021/2022 school year.

I am respectfully asking for your financial support and to join me as a partner in PXSO. Here is what your contributions will support:

-Interdisciplinary Artistic Director

-Performer/Storyteller

-Technology Specialist

-Video/Visual Art Technician

-Audio Engineer/DJ

-Venue Fees (rehearsals & public presentations)

-Equipment & Set Design

-Publicity, Promotions & Social Media Campaign

-Research & Documentation

All donors/partners will be offered the opportunity to experience PXSO either in-person or through virtual live streaming. Thank you so much for supporting PXSO and the stories of disability, resiliency and our collective humanity. For more information please visit www.kilusan1898.com/pxso. This fundraising campaign will conclude on September 10th, 2021.
Here’s the link to make a donation:  https://bit.ly/2VRPLVm

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