By: Miggy Jose | Harbinger
On the afternoon of October 25, 2026, the upper ground level of SM City Manila stopped behaving like a shopping mall. Families in yellow, purple and white filed past a registration table that opened at half past noon, ballpens in hand and face masks in place, many of them wheeling through the E4 doors along San Marcelino Street because the organizers had thought, in advance, about which entrance would be easiest to enter. By one o'clock the activity center had become a room where a condition usually discussed in clinical language was being talked about as a life.
The Spina Bifida Support Group Foundation, Inc. had chosen a theme that refused to let the conversation stay small titled “A Lifetime of Experiences, From Preconception to Ageing”. Youth volunteers from the Volunteer Youth Leaders for Health-Philippines (VYLH-PH), from UPLB student organizations of The UPLB Genetics Society and Philippine Association of Nutritionists-Alpha Omega Chapter have come in great spirits and camaraderie onward the conduct of the event.
Spina bifida occurs when the spine and spinal cord do not develop properly while a baby grows in the womb, and it frequently brings hydrocephalus with it, a buildup of fluid in the brain caused when a malformation linked to spina bifida blocks the normal flow of cerebrospinal fluid. Neither condition ends at discharge. The program was built to match that reality, moving from prevention to childhood to adulthood in a single afternoon.
Rather than open with protocol, the host built the middle of the program around testimony. Under the heading "A Lifetime of Stories," Mrs. Tabitha Andrea V. Yarde, Mr. John Samonte, and Atty. Jessica Siquijor-Magbanua each took the floor, followed by youth speakers including Sebastian Elias T. Lagrason. Between them came presentations by SBH children, SBH Youth and SBH Adults, three groups occupying the same stage in sequence to showcase community rooted within.
The presence of Commissioner Maria Amifaith S. Fider-Reyes of the Commission on Human Rights gave the day a rights dimension rather than a purely medical one, and Mr. Roy Benedicy L. Seguerra, Assistant Mall Manager of SM City Manila, delivered a message on behalf of the host venue.
The keynote address arrived and carried the weight of the day's theme in its title “From Prevention to Lifelong Care: Supporting People with Spina Bifida and Hydrocephalus,” by Dr. Gloria J. Balboa, Undersecretary of the Department of Health placed a national health policy voice in a room full of parents and young people who measure policy in appointments kept and supplies delivered.
Prevention was not treated as a separate topic. Volunteers from the Volunteer Youth Leaders for Health – Los Baños Chapter attended specifically to promote folic acid awareness, and the chapter used the event to repeat the most actionable fact in the field in which taking folic acid supplements before and during pregnancy can significantly lower the chance of a baby being born with spina bifida. The presence of the organization linked the afternoon's celebration to the families who have not yet been formed, the ones for whom the story might not begin at all.
Dr. David T. Bolong, founding president of the foundation, delivered the closing message and acknowledgement before the community fellowship began, and the gratitude that followed spilled past the program's formal end. From note afterward, a foundation officer thanked Balboa, the organization's officers and doctors, SM City Manila, SM Cares, Folares Pharmaceuticals, Folic Acid PH, the Volunteer Youth Leaders for Health Philippines and the International Federation for Spina Bifida and Hydrocephalus.
The same note described the work in modest terms, as an effort to inspire parents to keep believing in their children's dreams "no matter the physical setbacks they face," and to keep sending them to school. Then it dedicated the ballad "Paano Kita Mapasasalamatan" to the community, with an admission that read less like a closing remark than a confession: it is a song that cannot be sung to the end without a voice breaking.
The invitation to the event had promised three things in sequence, "Experience. Connect. Celebrate," and asked guests to bring a small gift if they wished, to arrive in time for the raffle, and to mask up for everyone's safety. It was a practical list, but it described a philosophy. Accessibility was arranged in advance, not improvised at the door. Prevention was taught alongside celebration. Children, youth and adults were given the same microphone.
What the afternoon demonstrated, to a room of several hundred, is that a lifetime of experiences with spina bifida and hydrocephalus is more than a single story told once for it is a long one, told in stages, and it goes better when the venue picks the right entrance.
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