Juan day at a time

He is intelligent, 5’8" with beautiful expressive eyes. He speaks with passion and inspires people. It may seem that I’m talking about the most eligible bachelor in town. Maybe he is.

Juan Madaraog, a.k.a. Dickoy, has been featured in ABS-CBN’s Pipol, and in major dailies, including a column by fellow STAR columnist Nina Corpus.

When I got to his apartment that doubles as his office, Dickoy asked if I could write about the organization that he’s supporting: The Philippine Society for Orphaned Disorders.

Dickoy has Pompe’s disease, an autosomal recessive genetic disorder caused by a deficiency or a dysfunction of the lysosomal hydrolasae acid alpha-glucosidase (GAA). This enzymatic defect results in lysosomal glycogen accumulation in multiple tissues, with cardiac and skeletal tissues mostly seriously affected. (www.pompe.com)

The disease manifested on Dickoy at age 10. He had difficulty running because his legs were weak but his doctors prescribed corrective shoes saying, it was Muscular Dystrophy.

Years later, the family went to San Francisco to get a second opinion. The muscular dystrophy doctor they ordered said it was something else. Immediately, a series of tests were done on him, and finally, the doctor concluded it was Pompe’s. It took them six years to get a proper diagnosis.

If not for his family, Dickoy says, he would not have lived to this day. Despite being dependent on his wheelchair and a machine to breathe, he managed to graduate from DLSU-St. Benilde with a degree in industrial design. He is now a professional graphics artist. But it was never easy. He recalls what a teacher once said about success. "Success is not where you are, but how you get there. So to me a lot of people are demotivated baka hanggang dito na lang ako . In my case, if I compared myself to other people, maraming mas successful., but to get to where I am, talagang ginapang ko, I had to strive to be the best I can be with every small step I took. To me, it’s a valuable lesson on success."

And perhaps it was his perseverance that merited more blessings to come his way. From the expensive bi pap machine given to him, a date with Heart Evangelista, an interview with his crush, Nina Corpus, a test ride on a red Ferrari… the list goes on…

He is blessed, and he wants to give back.

People with orphaned disorders are not given enough attention because there are only few of them, only one out of every 20,000 individuals. They are long standing, life threatening, progressive, disabling conditions that require multidisciplinary care. (www.psod.org.ph) It may not be meningococcemia, bird flu, dengue or cancer, but Dickoy believes the life of every individual should be valued and respected. "Dahil ba konti lang yung may sakit na ganyan hindi na siya tutulungan? You’ll never know if the next greatest person will come from one of us. One of the greatest scientists today, Stephen Hawking, has ALS. If people never gave him a chance, we will never know."

The treatment of orphaned disorders are quite expensive for the families of the patients, and often impractical for pharmaceutical companies to invest on. There are only two of them diagnosed with Pompe in the Philippines. The other is a three-year-old boy brought to the US for early treatment and diagnosis. Dickoy received his enzyme replacement therapy only in December of last year through a sponsorship which costs almost a million pesos every month.

"My view is, the world has enough resources for everyone regardless of the illness so who are you to say that one life is more precious than the other?"

Before Dickoy received his treatment, doctors told him he only had until 30 years old to live (he’s now 29). He is hoping to get an extension to life, and is wasting no time. He put up a website, www.fightpompe.com, to spread awareness on Pompe’s disease and he takes every opportunity to talk about the cause.

"I’m always glad I can help someone. It’s one of the driving forces why I do this. Hindi naman ito because I want to be a star sa TV but I’m glad ’coz it’s a chance to advocate for those who can’t. For those who are few in number na walang pumapansin sa kanila kagaya ng sakit ko, it’s a chance. I’m in the position to do so, so why not?"

Given the chance, he wants to write for an international publication like Time magazine, and join Kapamilya, Deal or No Deal to raise funds for the foundation.

Dickoy knows it is a tough battle, given such a limited time, but he is giving his best Juan day at a time.

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