Kenneth's Beam

Source:  Kenneth's Beam    Tag:  morquio syndrome facts for kids
I am reading over my posts from way, way back, and i think this is one of the most interesting stories i have on my roll. When I was reading this, I felt like I was living through such a pleasant and beautiful moment with Kenneth. It makes me wonder how the kid is doing now, actually, over the years (beginning from year 2006, when I first met him) I get to think of him once in a while. He may already have turned 11 this year. I hope there's a way for me to see him again, to say hello and witness the beam on his face; to hear him play the piano again; to know how his grandmother and aunts have been doing; to recognize the beauty of life in the eyes of the child.





Dec 22, '06 6:49 AM
First quarter of this year gave me the chance to explore the other side of life. In one of our courses, we were required to find best practices of Corporate Social Responsibility by business corporations and enterprises. Through the genuine effort of my group mates in this project I was able to find new lessons in life.

It was the Philippine Airlines Foundation headed by Tita Menchu Sarmiento who was very kind to help us in this project. As of interest, she indulged us in several projects and programs of PAL foundation. However, there is one case that really touched my heart. Perhaps that case alone is enough for me to opine that PAL really does practices CSR at its best.

Tita Menchu insisted to bring us to Manggahan, Pasig, were the lead of my story reside. Kenneth Villa is 8 years old and is suffering from a rare mucopolysaccharide (MPS) disorder called Morquio Syndrome (MS). As of yet, there are only 3 known cases of MS in the Philippines. Kenneth who is one of them, has been bedridden for the last 4 or 5 years, flat on his back, with a tracheotomy tube attached on his throat and is hooked to a ventilator.

According to Mucopolysaccharide Association Disorder Fact Sheet, MS is an inherited affliction classified to the group of Mucopolysaccharide storage diseases. It is a condition where cells are not functioning properly, induced by the store up. It prompts damage to the body including the heart, bones and the central nervous system.

Kenneth’s MS may have been caused by a recessive gene. It is usually acquired from an adult carrying an abnormal gene and marries another carrier. Only one in every four chances with every pregnancy that the child will inherit the defective gene.

What makes Kenneth’s case extra special is that his parents abandoned him. While he is under the care of his aunts (sisters of the father), his father now refuses to recognize him. In their small home in Pasig, Nicole (my group mate) and I met Kenneth and his aunts plus Lola Edna, his grandmother. Everybody welcomed us as if we were no strangers at all. Initially, I felt like we were family to them, they even prepared food for us.

Kenneth’s room is maintained and highly sanitized. When we entered his room, he just finished watching morning cartoons from a local network. Tita Menchu introduced us to him, and he was a bit shy. According to his aunt, Kenneth would shy away every time he would see girls. Then I openly asked questions about him. I commenced by inquiring about his favorites. When he started to answer, I noticed the gasp every time he speaks – must have been the tube attached to his throat. While engaging some small talks with him, I felt some throb in my heart, which would usually bring me to tears. But then, I didn’t even have to shed a tear because Kenneth was just so charming that he would make everyone smile. I would tease Nicole, because Kenneth would only smile and talk to me. Nicole would just say “ay bakit kaya?” then Kenneth would beam.

There were moments of silence, as Tita Menchu would talk to Kenneth. Kenneth speaks to her like she was a real mother and she too like a mother checking on how the day was for her child. I am moved when I learned from Lola Edna that there have been several friends who comes to visit Kenneth once in awhile. And those friends as Lola Edna would say, are not ordinary people; they are well-known, the “celebs” as others would put it. Kenneth’s Aunt gave me an album to browse upon. Lola Edna was right when she said that Kenneth’s friends are no ordinary people, I saw them in the album. Actually, I was surprised because they are not only celebrities in their field but people who are really shining because of their genuine heart to help him.

Lola Edna shared the story of Kenneth. Can I just say, “Man, if you hear the story, you’ll surely cry a river!” But no, I didn’t because I was very keen at Kenneth who was very quiet. I noticed that Kenneth was not reacting. I don’t know if he was listening but he was just staring at us as if waiting for our eyes to meet. When we did, he gave me a smile, I would jokingly say something, and then he would snicker. Lola Edna would smile every time he sees Kenneth smiling.

According to Lola Edna she almost lost everything, including her family. She used to own a sari-sari store outside their compound but she had to close it because of financial burdens. I guess I would not have to elaborate that part. We all know how much an illness would cost. Her family was divided when Kenneth’s father refused to recognize him after marrying abroad. Kenneth’s father works in Dubai and would usually come home to visit him until he was two years old. His father’s siblings were divided on the issue of keeping Kenneth under the custody of Lola Edna. But his aunts surely stuck it out, no matter what. In spite being college graduates and having stable jobs overseas, they decided to help Lola Edna with Kenneth. I didn’t see any remorse in the faces of his aunts; they seem to enjoy taking care of him.

I saw Kenneth press the telephone near him. At first I thought it was just one of the things that entertains him. Then his aunt suddenly entered the room with some medical and cleaning tools. Alas! It was already time for his “suction”. I inquired about it, and then his aunt said it is to help the breathing of Kenneth. I could not even imagine how it is to breathe through the tube.

Earlier then, while I was inquiring about Kenneth’s favorites, his aunt mentioned that he loves to play the piano. He has a talent for music. He owns a battery-operated keyboard. Then he started to hit those notes with his frail fingers. I was so amazed that he could play perfectly well even with feeble hands. He played several pieces, but he caught my heart when he played my favorite song “Somewhere Over the Rainbow”. I grabbed my phone to take some pictures of him, and he would pose for a smile. His aunt took some pictures too, because according to her, Kenneth really loves to see photos of people who visit him.

Want to be awed more? Well, he has read a lot of books and knows a lot of things – Kenneth is very smart. Some good heart gave him a laptop and I bet he is better in operating those tech objects than me. He owns a cellular phone, and he didn’t forget to give me his number so we could send messages once in awhile. His aunt said, he must have liked me that’s why he was sharing a lot of himself to me, to us.

I wonder where he draws all the courage to hurdle all the oddity in his life and face the world with precious smiles. Despite his enfeebled body, marvel how this young boy manifest his gifts and talents and share it with others. If the child really did like me, I like him a lot, too. He is very special, and God knows how I admire his strength and faith. It must have been the people around him, Lola Edna, his aunts and his friends, they help him enjoy his life notwithstanding what has been bereft of his childhood. Or probably its God’s desire to show the world how much he loves us. That whatever he may not have been able to give us, he makes it a point to make up at other aspects of our life, all else being equal. Go figure. I can say that physically, I may have been blessed compared to Kenneth, but who said he isn’t blessed at all? Did I ever mention his smiles? If I didn’t then, I must have to stress that it is his blessing. Kenneth’s smile is a blessing because it has made a lot of people happy and appreciate life. Proof to that, allow me to say, that somebody like me did experienced it and so are the people who knew him personally and those who have yet.

Perchance our destiny have been predestined once. Kenneth may have had a sordid one, but he is not complaining. He is satisfied with the environment that he is exposed to. He may not have his biological parents around him, but that does not leave him without parents at all. Lola Edna and Kenneth’s Aunts were able to do it, in the context of love and understanding.

Kenneth’s story has given me a repository of extra-ordinary graces. It will forever illuminate my spirit as I recall the strands of determination and leap of faith that he make in his embraced life.