Dickoy told me he read my earlier article entitled Conquering Everest. He asked why I had reservations about some climbers attempting to summit the world’s highest peak. Why I kept toying around with the question, if a climber doesn’t make it to the top of Everest, would he have died in vain?
All of a sudden the feelings I had been keeping about the "whole Everest thing" came out like a bitter pill. I reasoned out that it’s practically a suicide attempt, that the climbers are selfish. Why would you risk depriving your wife a husband or your child a father? Rant, rant, rant. After I finished, he paused and smiled, "What if the climber makes it?"
I looked at him and all of a sudden I felt so small and embarrassed. This was the response of a guy who is bound to a wheelchair, who needs a bi-pap breathing machine 24/7 because his respiratory muscles are weak, who was told by medical experts that he will not make it beyond the age of 30. Dickoy is turning 29 in November – but why did it seem like I had bigger problems in life? Shame, shame on me.
Dickoy’s real name is Juan Magdaraog. He lived a normal, active life until tragedy struck when he was just 10 years old. At first, he was mis-diagnosed with another type of muscular disease. It was when he turned 15 that doctors finally concluded he had a rare disorder called Pompe’s disease, a degenerative disease that caused his muscles to weaken and slowly waste away. The muscles most often affected are those used for breathing and for moving around. Fewer than 10,000 people in the world have Pompe and Dickoy is only one of two known Pompe patients in the Philippines.
I asked him at what point in his life he was able to accept his disease. Dickoy told me it didn’t happen overnight. Since Pompe’s disease is gradual, his acceptance of it was also gradual. It wasn’t until he was older and wiser did he realize that "you just have to learn to live with the things that are given to you and make the most out of it."
I first met Dickoy through a reunion with old friends just over a month ago. He was supposed to join our dinner out in Makati but wasn’t able to make it. My friends decided to pay him a surprise visit so off we went to his condo in Greenhills at one in the morning. I was told he suffered from a rare form of disease. When I saw him I immediately noticed the plastic tube across his face and the bi-pap breathing machine beside him. He talked with a bit of difficulty but he never showed us it bothered him. In fact, when you start talking to Dickoy, the breathing device, the sickness becomes invisible and you begin to see the person.
The person I’m talking about is a smart, friendly, accomplished guy who happens to have Pompe. Despite his sickness, he continues to live a productive life. He is a web designer and is the creative director of Sparkplug Studios, a company he describes as a small start-up which he runs with his brother and some friends. He also writes regularly for the IT magazine, MPH. Dickoy is also an active member of Singles for Christ. In his blog, www.fightpompe.com, he wrote that he loves two things in this world with a passion – Apple computers and Ferrari. Aside from his everyday musings, the blog, of course primarily chronicles his fight with Pompe’s disease.
Last December, Dickoy was lucky to be chosen as a "test case" to receive Enzyme Replacement Therapy using the drug Myozyme which was recently approved by the Food and Drug Administration in the US. The changes aren’t dramatic he said but he feels better and stronger now that he is getting the treatment twice a month. Though just like any test, it is still subject to a lot of risks and uncertainties but knowing Dickoy, he will always look at the brighter side, "Sure what happened to me is bad, but really when you look at my life, there are still more good than bad."
Now that I have written lengthily about Dickoy, you might ask, why is an entertainment reporter like me writing about a non-celebrity? Well, because in my own little way, I really hope for Dickoy to reach celebrity-status, as well as the Pinoy mountaineers who made it to the top of Mt. Everest and made our country proud. There are many, many more individuals who deserve all the attention.
I still remember my interview with Bishop Socrates Villegas, who was then the secretary of Cardinal Sin. He published a book and I went to cover his book launch and asked him how he felt about his celebrity status. His answer made quite an impact on me. "We don’t need celebrities, we need heroes." Of course he wasn’t talking about Superman, Panday or Captain Barbell but real-life heroes, celebrity or not, who can truly inspire and use their God-given gifts to make a difference in this world.