Written by Feliss Sanchez
Original Published in Newborn Screening
In its commitment to empower the youth toward optimal health, the Volunteer Youth Leaders for Health–Philippines University of the Philippines Manila (VYLH-Philippines UPM) held "I Am Rare: Alone We Are Rare, Together We Are Strong", a pilot standalone advocacy project for children with rare disorders, at the Tipunan grounds, UP Manila, on April 25.
This year’s program gathered 40 kids from its affiliate institution, the Philippine Society for Orphan Disorders (PSOD). The day-long charity drive was held to uplift the children’s spirits by evoking physiological and psychosocial awareness for young patients with rare diseases. UP Manila Chancellor Dr. Carmencita D. Padilla, who is also the National Program Coordinator and Founding Adviser of VYLH Philippines, graced the event.
“Isa akong proud na Chancellor ng UP Manila dahil sa event na ito ay mabibigyan natin ng kasiyahan ang mga batang may rare disorders,” Dr. Padilla said in her opening remarks.
Orphaned by Society
According to Rufus Thomas Adducul, VYLH–National Capital Region (NCR)-South Luzon Cluster Coordinator, Filipino children born with rare diseases are usually “orphaned” by society through social abandonment and lack of medical help. In the Philippines, a disease is considered rare if it affects one in every 20,000 individuals or less.
VYLH-UPM Co-Project Head Feliss Sanchez said that UPM chapter’s “I Am Rare” program recognizes the kids’ courage in facing daily challenges and that was a success in terms of giving the children what they truly deserve.
“We did this event to celebrate the strengths of these rare kids who go through the daily struggles of rare diseases, to celebrate the childhood of these kids,” she added.
Together with Cluster Secretariat Marian Therese Cuenca and participating UPM student organizations, namely, UP Health Sciences & Pre-Medicine Society (HS+PM), ALAB and College Student Council of UP College of Public Health (CPH), AWSAMS and Volunteer Corps of UP College of Allied Medical Professions (CAMP), YEARN of UP College of Nursing (CN), ProPharm of UP College of Pharmacy (CP), Biological Sciences Society, Biochemistry Society, and OMAKE of UP College of Arts and Sciences (CAS), VYLH prepared several presentations and booths for the children.
Disney-themed characters presented different theatrical plays for the kids who were given “student buddies” to guide them throughout the day. Moreover, the UP College of Medicine Choir sang the national anthem, while UPM’s Indayog dance varsity, CAMP Synergy, and Pharm Jam also performed for the children.
Fight for Quality Life
During the commitment ritual led by National Secretariat Aster Lynn Sur, parents and guardians of the rare kids expressed their deepest gratitude to the National Institutes of Health (NIH), VYLH-Philippines, PSOD, and UPM students for inspiring the kids to fight another day.
“Malaki ang pasasalamat namin sa inyo dahil bilang isang magulang, basta makita namin silang masaya ay masaya na rin kami,” expressed a parent of a child with Gaucher’s disease.
To cap off the program, selected children performed a dance number to the tune of PSOD theme song, Lalaban Kami. The song encourages the children further to continue their fight for a better life.#
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