His story
March 11, 2005 | 12:00am
His name is Juan Benedicto Magdaraog. They call him Dickoy.
I met him only recently at the LEAP leaders conference. The auditorium was packed with the best and brightest students universities could offer. And they were all silent.
I could hear the low voice of someone speaking into a mic, and another sound I couldn’t recognize, a series of harsh, regular rasps. It was only until I was led to my seat that I understood the hush over the audience.
Onstage, a young man was speaking into a lapel mike. He sat on a wheelchair, with one hand manipulating a remote for the Power Point presentation behind him. The sound echoing through the hall was his breathing machine.
When Dickoy finished speaking, the audience was on its feet, clapping for the young man with the extraordinary story.
He was 10 years old when the symptoms began to show. Before that he was as normal as any kid – he could swim, run and play. At 10, he couldn’t run as fast or play as hard. By the time he was 14 he was diagnosed with muscular dystrophy.
Even with the proper treatment, Dickoy steadily grew worse. His father combed the Internet and wrote letters in the hope of finding an alternative solution. Finally, he was referred to Dr. Alfred Sloanim in New York, who invited them to the United States for consultation.
At that time, 19-year-old Dickoy was 5’7" and weighed a total of 60 pounds. Their stopover in San Francisco led directly from the plane to the emergency room because Dickoy was having trouble breathing. It was in San Francisco where they diagnosed Dickoy’s disease as it really was: Acid Maltase Deficiency – or Pompe Disease.
Pompe Disease is a rare genetic affliction that is caused by the body’s failure to produce the enzyme responsible for the breakdown of glycogen into energy. Without the enzyme, the glycogen is deposited in the muscles and causes progressive muscle weakness throughout the body, affecting a range of body tissues, particularly in the heart, skeletal muscles, liver, and nervous system. With many, it has proved fatal.
In New York, Dickoy was so weak and ill that they had to bring him to the Intensive Care Unit and hook him up to a breathing machine. He recalls one night when his mother shook him awake, and he saw his father, who was supposed to be in their apartment, sitting by his bedside. "Why are you here, Dad?" he asked. His father smiled and said, "Because I missed you."
They told him afterward that he was in a critical state that indicated a possible cardiac arrest. The doctors wanted to open him to insert a tube that would pump air into him directly. His mother refused to make a decision until his father arrived.
The commotion came to the attention of the hospital’s leading pulmonary doctor, who just happened to be making his rounds. He asked what was wrong, and then changed the settings of the breathing machine. "Call me back in a few hours," he said. In a few hours, Dickoy was stable.
Dickoy’s stay in the research ward was guaranteed by Dr. Sloanim free of charge – after all they would be conducting their research on him. However, since Dickoy was compelled to stay in the Intensive Care Unit and was too weak for research, his parents feared the inevitability of shouldering the entire of Dickoy’s hospital bills.
It was at this point that Dickoy’s doctor came in. "Don’t worry about the bills," he said. "They’re on us."
Dickoy went on to study in the College of St. Benilde. Although he wanted to be an architect, UP Diliman was ill equipped with facilities to handle Dickoy’s particular case. In CSB he studied art design. "I had a normal college life – school, friends, fun, and I passed courses. I liked looking at pretty girls – there were so many."
He says he had his first crush when he was in fourth grade. "I saved my allowance for the longest time to buy her posters." He had a sheepish look on his face, so I asked: "Did she accept them?"
"She did," he said. "But she didn’t seem too happy about it. That’s okay. She was in seventh grade – an older woman. Back then one grade above was everything."
He told me the story of his one real love.
She was an intern at the clinic where he has his physical therapy. During his session she walked into the room and was introduced by his therapist. She offered Dickoy candy. He thought she was sweet.
When he found out she had a Globe phone (back then cell phones were rare) he took it as a sign and started texting her using the emergency line his parents had given him. "I justified it by saying that texting girls could be defined as an emergency." He went to therapy more often – "obviously not for the exercise"– and they went out a few times.
"Then it became ‘us.’"
She had to leave for the States shortly after they became a couple. "It was her dream to be a therapist there long before I met her. If you love someone, you let them follow their dreams."
They’re still good friends. He decided to visit her in 2001, and convinced his parents to let him go. He calls his mom his biggest supporter. His father, once he was convinced, even offered to accompany him and pay for part of the fare. Dickoy put away his money in what he called his "US trip fund." Unfortunately, the airline refused to accommodate him because of his condition.
On September 9th, the day he was supposed to leave, he stood in the living room with his luggage, still hoping that the airline would relent. They didn’t. He refused to unpack.
Two days later, on September 11th, two planes crashed into the World Trade Center – where he was supposed to meet a friend that day.
He left for the United States a month and a half later, after he persuaded his mother that there was no longer any danger. He came back thoroughly broke and incredibly happy. "There really is some value to being disabled – you get discounted theater tickets." It was the best month and a half of his life.
Right now he says he’s focusing on keeping healthy. A few years back, when his father realized that Dickoy couldn’t work in a corporate environment, he opened a website designing company called Innov8. Dickoy spent his internship in the company teaching himself the intricacies of computer graphics.
When he graduated, Dickoy decided to find himself another job. "I needed to see if I could get a job on my own merit." For two years, he worked as a web designer for I-Ayala, a start up established by the Ayala Group of Companies. Now he works again for Innov8.
People ask him why he still works.
"I don’t think I can look myself in the mirror and say I’m worth something if I don’t. I don’t make that much, but I still contribute. I pay for my extravagances and my medical expenses, I use my own money when I go out. It gives me a sense of self-worth. I can look at myself in the mirror and say I’m proud of myself.
"I know if I go up to my parents and say I’m tired of working, they’ll understand. But I can’t do that. I don’t think any parent wants to see his child wasting his life. Seeing the look on my parents’ face when they see I’m working in spite of everything means a lot to me."
His message to the youth is a simple one – but it’s one that stands out all the more because of what he’s made of himself.
"We’re always taught to be the best. I believe it’s true, but that it’s only partly true. You can’t always be the best – there’s only one Michael Jordan. If you keep wanting to be the best a hundred percent of the time you’re bound to be disappointed.
"My theory is that a person should try to pursue the best he can be. Even if I can’t get everything I want, I’ll still be happy because I know I tried to my full capacity. I can’t fail."
Throughout the interview Dickoy talks about "keeping the faith." He says he’s not that noble, death is his greatest fear. "I want to have a family," he says. "But I might not live till 30 – then again who knows? I might hit a hundred. I just trust in the Lord."
It’s difficult to understand where the strength of his faith comes from. He laughed when I asked.
"How can I not have faith? Look what I have. I have a mother and a father who love me, a brother who supports me; I have a roof over my head and three meals a day. I have a warm bed when it’s cold out and cold room when it’s too warm. I watch movies eat in restaurants. I’ve experienced things other people never have. I’ve felt true love, even just once. Honestly, I have it better than most people.
"Right now I’m in a pretty good position to share God’s message: ‘Get the most out of life; be the best you can be.’"
It was his turn to ask me a question. "Are you familiar with Marshall McLuhan?," I’m a speech major – for once I knew the answer. "He’s the one who said that the medium is the message."
He smiled and told me about how after the LEAP leaders conference, one of the organizers handed Dickoy a thank you note. She wrote: "Your life is your message." It meant a lot to him.
"My message is generic," he explained. "Anyone can say it. But when I say it, people pay attention – because it’s my voice going through that mike, breathing machine and all. I’m one lucky guy."
And I’m one girl with a bit of a crush on an older man.
Send comments to pat.evangelista@gmail.com. Where in the world is Y Speak now? At a time when good TV is scarce, let’s support shows that mean something. Last news is that Yspeak is going live and moving from Kapamilya to Kabarkada.
I met him only recently at the LEAP leaders conference. The auditorium was packed with the best and brightest students universities could offer. And they were all silent.
I could hear the low voice of someone speaking into a mic, and another sound I couldn’t recognize, a series of harsh, regular rasps. It was only until I was led to my seat that I understood the hush over the audience.
Onstage, a young man was speaking into a lapel mike. He sat on a wheelchair, with one hand manipulating a remote for the Power Point presentation behind him. The sound echoing through the hall was his breathing machine.
When Dickoy finished speaking, the audience was on its feet, clapping for the young man with the extraordinary story.
Even with the proper treatment, Dickoy steadily grew worse. His father combed the Internet and wrote letters in the hope of finding an alternative solution. Finally, he was referred to Dr. Alfred Sloanim in New York, who invited them to the United States for consultation.
At that time, 19-year-old Dickoy was 5’7" and weighed a total of 60 pounds. Their stopover in San Francisco led directly from the plane to the emergency room because Dickoy was having trouble breathing. It was in San Francisco where they diagnosed Dickoy’s disease as it really was: Acid Maltase Deficiency – or Pompe Disease.
Pompe Disease is a rare genetic affliction that is caused by the body’s failure to produce the enzyme responsible for the breakdown of glycogen into energy. Without the enzyme, the glycogen is deposited in the muscles and causes progressive muscle weakness throughout the body, affecting a range of body tissues, particularly in the heart, skeletal muscles, liver, and nervous system. With many, it has proved fatal.
In New York, Dickoy was so weak and ill that they had to bring him to the Intensive Care Unit and hook him up to a breathing machine. He recalls one night when his mother shook him awake, and he saw his father, who was supposed to be in their apartment, sitting by his bedside. "Why are you here, Dad?" he asked. His father smiled and said, "Because I missed you."
They told him afterward that he was in a critical state that indicated a possible cardiac arrest. The doctors wanted to open him to insert a tube that would pump air into him directly. His mother refused to make a decision until his father arrived.
The commotion came to the attention of the hospital’s leading pulmonary doctor, who just happened to be making his rounds. He asked what was wrong, and then changed the settings of the breathing machine. "Call me back in a few hours," he said. In a few hours, Dickoy was stable.
Dickoy’s stay in the research ward was guaranteed by Dr. Sloanim free of charge – after all they would be conducting their research on him. However, since Dickoy was compelled to stay in the Intensive Care Unit and was too weak for research, his parents feared the inevitability of shouldering the entire of Dickoy’s hospital bills.
It was at this point that Dickoy’s doctor came in. "Don’t worry about the bills," he said. "They’re on us."
He says he had his first crush when he was in fourth grade. "I saved my allowance for the longest time to buy her posters." He had a sheepish look on his face, so I asked: "Did she accept them?"
"She did," he said. "But she didn’t seem too happy about it. That’s okay. She was in seventh grade – an older woman. Back then one grade above was everything."
He told me the story of his one real love.
She was an intern at the clinic where he has his physical therapy. During his session she walked into the room and was introduced by his therapist. She offered Dickoy candy. He thought she was sweet.
When he found out she had a Globe phone (back then cell phones were rare) he took it as a sign and started texting her using the emergency line his parents had given him. "I justified it by saying that texting girls could be defined as an emergency." He went to therapy more often – "obviously not for the exercise"– and they went out a few times.
"Then it became ‘us.’"
She had to leave for the States shortly after they became a couple. "It was her dream to be a therapist there long before I met her. If you love someone, you let them follow their dreams."
They’re still good friends. He decided to visit her in 2001, and convinced his parents to let him go. He calls his mom his biggest supporter. His father, once he was convinced, even offered to accompany him and pay for part of the fare. Dickoy put away his money in what he called his "US trip fund." Unfortunately, the airline refused to accommodate him because of his condition.
On September 9th, the day he was supposed to leave, he stood in the living room with his luggage, still hoping that the airline would relent. They didn’t. He refused to unpack.
Two days later, on September 11th, two planes crashed into the World Trade Center – where he was supposed to meet a friend that day.
He left for the United States a month and a half later, after he persuaded his mother that there was no longer any danger. He came back thoroughly broke and incredibly happy. "There really is some value to being disabled – you get discounted theater tickets." It was the best month and a half of his life.
When he graduated, Dickoy decided to find himself another job. "I needed to see if I could get a job on my own merit." For two years, he worked as a web designer for I-Ayala, a start up established by the Ayala Group of Companies. Now he works again for Innov8.
People ask him why he still works.
"I don’t think I can look myself in the mirror and say I’m worth something if I don’t. I don’t make that much, but I still contribute. I pay for my extravagances and my medical expenses, I use my own money when I go out. It gives me a sense of self-worth. I can look at myself in the mirror and say I’m proud of myself.
"I know if I go up to my parents and say I’m tired of working, they’ll understand. But I can’t do that. I don’t think any parent wants to see his child wasting his life. Seeing the look on my parents’ face when they see I’m working in spite of everything means a lot to me."
"We’re always taught to be the best. I believe it’s true, but that it’s only partly true. You can’t always be the best – there’s only one Michael Jordan. If you keep wanting to be the best a hundred percent of the time you’re bound to be disappointed.
"My theory is that a person should try to pursue the best he can be. Even if I can’t get everything I want, I’ll still be happy because I know I tried to my full capacity. I can’t fail."
Throughout the interview Dickoy talks about "keeping the faith." He says he’s not that noble, death is his greatest fear. "I want to have a family," he says. "But I might not live till 30 – then again who knows? I might hit a hundred. I just trust in the Lord."
It’s difficult to understand where the strength of his faith comes from. He laughed when I asked.
"How can I not have faith? Look what I have. I have a mother and a father who love me, a brother who supports me; I have a roof over my head and three meals a day. I have a warm bed when it’s cold out and cold room when it’s too warm. I watch movies eat in restaurants. I’ve experienced things other people never have. I’ve felt true love, even just once. Honestly, I have it better than most people.
"Right now I’m in a pretty good position to share God’s message: ‘Get the most out of life; be the best you can be.’"
He smiled and told me about how after the LEAP leaders conference, one of the organizers handed Dickoy a thank you note. She wrote: "Your life is your message." It meant a lot to him.
"My message is generic," he explained. "Anyone can say it. But when I say it, people pay attention – because it’s my voice going through that mike, breathing machine and all. I’m one lucky guy."
And I’m one girl with a bit of a crush on an older man.
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