“No parent should have to outlive their child.” It is a saying most of us have heard before. For parents who have to continue on after losing a child, the question becomes, how do you cope?
Sedona Wan de Guzman faced challenges from the moment she was born. She arrived three months early, suffered a brain injury, spent six months in intensive care, underwent brain surgery and was eventually diagnosed with hemiplegic cerebral palsy.
Still, to the amazement of her doctors, nurses, and even her parents—Amy Wan and Jonar de Guzman—Sedona was making great progress.
Throughout the process of finding the right treatments for their little girl, Wan and de Guzman joined support groups with other parents navigating through the same process. They quickly learned that caring for a child with special needs was hard, but for single moms, those with language barriers, or those who have to leave their child to work and tend to the needs of other loved ones, the process is much harder.
Just 17 months later, Sedona developed meningitis, a type of infection that causes swelling in the brain and spinal cord. Less than 24 hours after contracting the infection, Sedona passed away on January 23, 2023.
While dealing with their loss and grief, Wan and de Guzman decided to let the light from Sedona shine through them and help others.
The family started a GoFundMe page to help them start The Sedona Butterfly Effect Foundation, which will help families navigate services, learn about early intervention, and more.
On today’s “The Word” podcast, Amy Wan and Jonar de Guzman share details of Sedona’s life and why they felt the foundation is so important.
You can read more about Sedona and her parents in a story by Laura Anaya-Morga here.