According to his research, the muscle fibers that break down are continually replaced during the first few years of their life. Unfortunately, the body has a limited capacity to replace the muscle fibers. Eventually, the rate of regeneration cannot keep up with the rate of degeneration. And to make matters worst, cure is yet to be discovered. 

By their late teens or twenties, the condition is severe enough to shorten life expectancy. Because the chest muscles become weaker, it becomes more difficult to move in air and carbon dioxide out of the lungs and there is increasing difficulty in fighting off infections. Death is usually due to this problem, but occasionally with proper care and management, a person with DMD will live beyond his or her average lifespan.

Challenge

When Louie was 7-years-old, his classmates asked him why he always stumbles. Sadly, he had no ready answer. At first, the doctors said it was a simple case of being lampa and his parents don’t have to worry about it. Things started to get worst though. When he was in third grade, he was already having a hard time climbing the stairs. His teachers allowed him to stay in the makeshift room on the ground floor. This caught the attention of his classmates and other school employees who are not as understanding. They kept on asking him why he stayed downstairs. 

It was then that his parents decided to seek more thorough medical check. He was in third grade when he found out that he was suffering from the rare disease of Muscular Dystrophy. 

The doctors told the Hilario family about the bitter truth that their eldest child has a few more years to live. The average lifespan of people who suffer from this disease is between 14-17 years old and he was already 9 at that time. 

Louie’s family showered him with undivided love and attention. They supported him in whatever he likes to do. Still, there are others who are insensitive to his plight, “when I go to the mall, there are other people who do not pay attention when I talk to them,” he said. 

The disease too was starting to test his patience. Before he reached his teens, he could barely walk, he had to use a wheelchair most of the time and he became irritable. There are times that he would have hard time breathing – part of the complications of Muscular Dystrophy. 

But like any other teenager, he took interest in playing video games, going to the malls and surfing through the internet. Challenges aside, he had a glimpse of teenage life. 

Realization 

In 2001, he had a near death experience. He had a difficulty in breathing – so difficult that he became unconscious. His parents brought him to the hospital and he miraculously survived the ordeal. 

In search of answers, he attended numerous Victory Christian Fellowship gatherings and realized God has a reason why he kept him alive. 

He researched through the internet and gained some ideas on how he can help others who are suffering from the disease. He also found out that depression and poverty has been the no. 1 killer for those with DMD. 

Purpose and Calling 

Louie turns 23 next week – 6 years more than the average lifespan.He plans to organize a support group for people like him. Although the disease is rare, the great marvels of science like the telephone and internet will virtually allow them to gather as one group often. The support group shall allow them to interact with each other – sharing stories to people who suffer the same disease proves to be therapeutic. Another benefit of having a support group is it will increase the public’s awareness and understanding to people like him. 

He would also like to help put up a foundation so that those who are not as privileged will have access to medical care and funding. 

Today, an oxygen tank is placed near his bed. It is always on standby just in case something goes wrong. He suffers from daily back pains and is perpetually on steroids (he takes it every other day), Louie lives up to the challenge and is determined to finish his mission – to share his wonderful story, serve as inspiration and help others who are suffering from the same disease. 

For comments and suggestions please contact: 

Mr. Chico Pena
Cel No. 0915-9269722
Chico_pena@yahoo.com

Mr. Louie Hilario
louiehilario@gmail.com