Goodbye Gabbie

It’s always hard to say goodbye to people. Especially when they’re still young. Today I went to the funeral of my friend Gabbie. I met Gabbie through his brother who happens to be one of my good friends.

It’s been close to 9 years I think from the time I first met Gabbie. She was still a young girl then who was suffering from a hear condition. She was frail and sickly when I met her. She had strong faith though. She kept pushing.

By some miracle Gabbie got better. So much so that when you looked at her you wouldn’t think that she had a heart problem. She regained her health and looked really good. The doctors in fact were amazed by her recovery. Their family attributed this to her faith. She made a novena to go to a church in Batangas every first saturday of the month. She got better because of this I think. A true miracle.

However last friday, years after Gabbie got better she collapsed and was rushed to the hospital. She was DOA but was revived 30 mins after arriving at the E.R. Her prognosis was grim though.

Last Monday Gabbie passed away. It’s a devastating loss to her family. She was the youngest and well loved by all her family members. She had a way of bringing people together.

Even though doctors have said before that she was a “walking time bomb”, you’re never ready to lose someone. I know the family didn’t expect it so soon.

Gabbie, I know your family will miss you. Your friends will miss you too. I hope you’re happy there in heaven. I know you’ll welcome us with open arms when it’s our time to go.

God Bless you Gabbie.

Thank You Niña

I made it to the papers today and a news program last night. I have “Niña Corpuz”: to thank for it.

I met Niña through common friends. A friend of mine was celebrating her birthday and we were supposed to eat out. I couldn’t make since I had something to finish that night. However they decided to pass by the house on their way home from dinner. Niña was with them. So our paths crossed.

She asked if she could do an interview with me. Of course I said yes. Why? because any chance I get to talk about Pompe is a welcome one. Although she wanted to do a story on me as a person with Pompe as opposed to just the disease.

So a few weeks after our first meeting Niña came by the house to do an interview. It was a short but interesting interview.

She didn’t know when the T.V. interview would come out since it would be at the mercy of the producers of the shows. Finally it came out last night. The program it came out on was ANC’s “The World Tonight”. I didn’t know it was coming out on that show until several friends of mine sent me text messages to say that they saw me on T.V. Good thing there’s a replay. So I caught the replay at 2 a.m.

For the T.V. interview it was Lee Quisumbing who did the report but it was Niña’s story.

Niña also wrote an article about me for her column on “The Philippine Star”. It was a coincidence that this came out a day after the T.V. interview. As a friend of mine said, it was a media blitz. Hahaha.

The article came out in the entertainment section because Niña is really an entertainment reporter. She veered of her regular niche to write this story. It was quite amusing to see an article about me in the entertainment section. Surrounded by stories of celebrities. Something I’m not..

Niña did a great job. I liked the article. Not because it was about me but she presented the story well and it was a light but good read. I loved the first paragraph which goes..

bq. I’ve been told there are two ways of looking at things. Is the glass half-empty or half-full? I’m usually guilty of the former until a guy named Dickoy showed me that even if the glass is broken, it’s just, well, glass.

As a result of the T.V. interview and the article I received several emails and messages from people. All the messages were good and very much appreciated. Thanks to all the people who took time out to write to me.

Thanks Niña for writing the story. You’ve helped a lot in the Fight against Pompe. By doing the interview and writing the story you’re helping create awareness for Pompe. For that I am grateful.

If you want to read the article you can find it at “”: or at “Niña’s web site”:

13th Infusion

It didn’t help that I had my 13th infusion on June 06, 2006 or 06 06 06. I’m not normally superstitious but when it comes to matters of health or something like it, I’d like all things to be on my side. So imagine my nervousness on infusion day…

Well all in all it went well. My heart rate was up before starting the infusion but it was due to the fact that I had trouble.. well, going to the bathroom. After awhile my heart rate went back to normal. We were able to go through with the infusion without a hitch.

We ended a bit late though since there was a delay in mixing the enzyme. Nothing major. The pharmacy people had a meeting prior to mixing the medicine and couldn’t start on time.

After the 13th infusion, I must say there has been improvements. Small, very small but I know it for a fact. I can move my left arm slightly better. My neck muscles are also getting stronger.

So we’re halfway through the year. Things are looking ok. I hope that the next half is even better.

Awful, Awful Dining Experience

What I thought would be a nice evening turned out to be well.. not quite. At least not in the beginning.

The great thing about getting Myozyme is that now it’s allowed me to regain some of the things I’ve not been able to do. I now have more energy to go out again and enjoy life.

We went out to celebrate my brother’s birtday. We were going to eat at a restaurant called Buma at Tiendesitas in Ortigas Center. My mom and dad have ate there before and said that the food was good. My brother wanted to try it out.

I’ve been using a “Bi-Pap breathing machine”: 24/7 for several years now. I have it attached to my wheelchair. I also run it with an external battery although it can also run via electrical current.

When we got to Buma, we were seated at our table. We then asked if we could plug in to the electrical outlet to conserve my batteries. The waiter said yes. He then informed us that they’ll be charging us for the use of the electric outlet. My parents said sure. We were then told that it would cost 500 pesos per hour (a little less than $10). What the hell…

My dad went to talk to the manager to clear things up. It could have been just a mix up. No dice. The manager said that it was policy. My dad tried to negotiate a fair rate. Say 50 pesos an hour ($1). No luck there.

My dad went back to our table mad. He told us that we were leaving. He had our orders cancelled and we went to the restaurant next door.

Wow.. How uncompassionate can some people get.. I mean I’d understand if we were plugging in a laptop, celphone or whatnot. But a breathing machine?!?! Have a little heart. It’s not as if we’re going to make money of the electricity. Plus the Bi-Pap doesn’t draw that much power. Certainly not that much to warrant that kind of fee.

In the end we just ate at another place, Mario’s Kitchen. They were also going to charge us for electricity but at least at a reasonable 50 pesos ($1) an hour. After we finished dinner and were about to pay for the food. The waitress told my dad that they decided not to charge electricity anymore. My dad was happy. At least some people still had compassion in them. My dad left a tip for the waitress.

Rest assured my family will not be eating at Buma again.. Not until they apologize and promise not to treat customers like that ever again..

Happy Birthday Steve!

I want to wish my dear brother a happy, happy 25th birthday. I’m truly lucky to have a brother like you. I’m grateful for all these years that you’ve shown me how to be a good brother. You’re the epitomy of what a good brother should be. Kind, generous, loving and patient. I know it’s not easy to have a brother like me. It takes a lot of understanding and compassion to live with a brother who has a severe disability and yet I’ve never heard you complain about it. Not once.

One favorite anecdote I have of Steve is this.. When we were kids we had one of our usual chats. The topic of our discussion was what would we do if one of us won the lottery. My answer was “I’m going to buy a Range Rover”. I asked him what he’d do. His answer…”I’m going to donate the money to find a cure/treatment for Pompe.” Damn.. I was sooo ashamed at that time and in awe at how my brother loved me. All I could think of was a Range Rover and all he cared about was to see me get better. Now, how’s that for a brother.

To Steve, I wish you all of God’s blessings. I wish you enough. I hope that you get your hearts desires in the quantity that won’t make you take things for granted. I wish that life will be as good to you as how you are good to me.

I couldn’t ask for a better brother. For that I and our whole family is blessed to have you in it. I love you.