MANILA, Philippines — Juan Benedicto “Dickoy” Magdaraog initially thought obtaining a college degree was a futile endeavor.
Diagnosed with a rare illness called Pompe Disease, a metabolic disorder that damages muscle and nerve cells in his body, Dickoy was warned he may not live beyond 30 years old.
“Why even bother to study? Why even bother to go to school when I can just enjoy my life and be happy,” he recalled. “But I was asked, what if I get past 30? What will I do?’
Wheelchair-bound and requiring continuous assistance, including by a machine to help him breathe, Magdaraog, now 41, has since established himself as a successful web designer.
His decision to pursue an industrial design degree at the De La Salle-College of St. Benilde (DLS-CSB) was one of the best he made in his life.
“To me, the main difference in what I have right now, of having lived a very happy and productive life, is education,” Dickoy said. “Being able to finish college, having an education, really helped me. It opened opportunities for me in my adult life. And for that I will be forever grateful.”
Dickoy said it was an experience that he wants to share with others suffering from rare or orphan disorders, identified as conditions that affect less than one in every 20,000 individuals worldwide.
On Thursday, Dickoy, through the Philippine Society for Orphan Disorders (PSOD), signed a memorandum of understanding with the DLS-CSB for the establishment of the I Am Rare Scholarship Fund.
The fund, which will be lodged with PSOD, would provide financial support to qualified scholars to pursue diploma courses at DLS-CSB’s School for Professional and Continuing Education.
While the priority is to send a patient to school, he said the fund may also cover an immediate family member on the condition that they would support their families.
PSOD president Cynthia Magdaraog, Dickoy’s mother, said they hope to get more support for the fund to be able to send more students to school.
She said the organization is currently assessing possible beneficiaries for the program.
“What is important is to make sure that they are committed to see this through,” she said.
According to PSOD, there 319 Filipino patients in its registry who are diagnosed with 63 different types of rare disorders, including illnesses such as brittle bones (osteogenesis imperfecta) and maple syrup urine disease.
In addition to the fund, the organization also signed a memorandum of understanding with the DLS CSB to collaborate on various programs for people living with rare diseases, including public awareness initiatives, providing access to education of patients and improving the financial capacity of their families.
Inclusive education
DLS SCB president Dennis Magbanua said the partnership with PSOD is a welcome opportunity as it helps them achieve their vision of promoting inclusive education.
“We have established in Benilde that accessibility is not a privilege. Accessibility is a right,” he told The STAR.
“It’s not very common, but we are trying to develop it because Benilde would not be able to answer to everybody. There has to be a shared culture among the schools,” he added.
In addition to physical infrastructure, Magbanua said they have developed a culture of acceptance among stakeholders to ensure that all students feel welcome.
“You need to build a culture of acceptance in the schools. Not just awareness, but acceptance that we’re all the same,” he said.
“Some might have needs that are different from mine of the other students, but we’re all the same humans,” he added.