ABOUT
Our Story
Our beloved Sedona de Guzman was born 3 months early on Aug 5, 2021 and suffered an a Grade 4 intraventricular hemorrhage (a brain bleed) at birth. Before coming home, she spent nearly 6 months in the NICU, underwent 4 brain surgeries and 1 g-tube surgery, and was diagnosed with spastic hemiplegic cerebral palsy early on due to the extensive damage on the right side of her brain from the brain bleed.
We were never sure whether our little Sedona would walk, talk, or what quality of life she'd have. But with Sedona’s physician father, attorney mother, and the support of our extended family, we learned through research that early intervention therapy could yield remarkable results as a result of the brain’s neuroplasticity—the ability of the brain to rewire and reorganize. So, we sought out the best therapists and cutting-edge therapies and put Sedona through intense early intervention therapy early on.
And she did amazingly--she started moving her left arm, learned to roll, and sit independently. Her neurologist from the NICU saw her a year later and remarked that her achievements were an absolute miracle.
Just as she came into the world suddenly, Sedona also left suddenly. She was undergoing treatment for infantile spasms (a rare form of epileptic seizure in infants, primarily those with a history of brain injury). The medication left her immunocompromised, and she somehow acquired meningitis (presumably from bacterial gut translocation that her suppressed immune system was not able to fight). On January 23, 2023, in less than 24 hours after first showing symptoms, our Sedona left her body to return to heaven.
To honor Sedona, the we created this organization to help families with infants like Sedona—those who are at-risk or diagnosed with cerebral palsy-- achieve their full potential by providing greater access to care, therapy and treatments that we were able to provide for Sedona. Sedona required a far higher level of care than other infants, and many of the therapies and treatments we found to be effective are not covered by insurance or the "right type of insurance" and are cost-prohibitive for those without financial means.
Watch a 12-minute documentary about Sedona’s story
List of film awards:
Press
Mission
In memory of our beloved daughter Sedona, who made incredible motor achievements in her lifetime despite her medical history, our mission is to help families with babies 0-3 years old who are at-risk or diagnosed with cerebral palsy achieve their full potential by providing resources for greater access to therapy and care.
Board of Directors
Amy Wan, Esq.
Amy Wan is Sedona’s mother, and is a Director of Sedona Butterfly Effect.
Amy is an attorney and startup entrepreneur. She has founded several techs startups, including Bling (a crypto mobile gaming company) and Bootstrap Legal (real estate syndication and funds legal documents drafted by AI). As a Partner at Sosnow & Associates, she has over a decade of experience practicing securities, syndication, and crowdfunding law and has authored various articles, hosted podcast shows, and won awards in the industry. She started her career with the federal government in international regulatory and trade policy.
She holds an LL.M. in Public International Law from the London School of Economics and Political Science, a JD from the University of Southern California Gould School of Law, and a BA in Biological Sciences from the University of Southern California.
Dr. Jonar de Guzman, MD
Jonar de Guzman, who is the father of Sedona and a Board Member at Sedona Butterfly Effect, became inspired by Sedona's life and transitioned from clinical medicine into his current role as a health coach, Founder & CEO of 4 Truth Health. He hosts the acclaimed podcast, Glass Half Healthy, recognized among BoardVitals' top 25 medical podcasts in 2024. Previously as a Partner at Providence Medical Associates in Southern California, Jonar served as a hospitalist specializing in Internal Medicine and Lifestyle Medicine. He holds an M.D. from Georgetown University School of Medicine as well as a B.A. in Politics and Economics from New York University.
Trisha Loftis, RN
Trisha Loftis, BSN, began her nursing career after earning her degree from Old Dominion University in Norfolk, VA. For over a decade, she dedicated herself to neonatal intensive care nursing (NICU), where her focus on patient advocacy and family education flourished. Trisha's expertise extended to attending high-risk deliveries and implementing neurodevelopmental care strategies.
In recent years, Trisha transitioned her focus to supporting families beyond the NICU experience. She now collaborates closely with multidisciplinary teams, troubleshoots feeding difficulties and specializes in providing neurocentric care for children with Cerebral Palsy.
Committed to continuous learning and providing holistic support across the pediatric lifespan, Trisha completed a Community-Based Birth Doula training and pursued additional education as an End-of-Life Doula with which she will support children and adolescents with terminal diagnoses. These roles reflect her deep-seated passion for serving the pediatric population and ensuring comprehensive care for every child and family she encounters.