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Happy Birthday Dad!

I want to wish one of the two greatest persons I know (mom is the other one) a very happy birthday. My dad celebrated his nth birthday today.

I’m truly blessed to have a wonderful dad. A lot of people have asked me before how I’m able to cope with my problems, especially Pompe. Well one of the main reasons is my dad. He’s been a pillar of strength all these years. Giving me courage to go on. Always providing encouragement and pushing me forward.

I know that my dad is loved by his family, espcially us his immediate family. I am however truly happy that he is well loved not only by his family but by his co-workers and friends as well.

His staff at work made him a scrapbook with messages from people all over. It had messages from family, friends, co-workers, bosses, etc.. All of them had heartwarming messages for my dad. I can’t help but feel proud. While I was reading the scrapbook there was a warm feeling inside. I thought to myself “Hey, this is my dad they’re talking about, and it’s all wonderful things.”.

I know some people say nice things about others but don’t really mean it. I’m sure all the words in the scapbook were meant. My dad’s staff wouldn’t go through all that trouble if they really didn’t love him.

Dad, I just want you to know that I’m extremely blessed and lucky to have you. Words cannot express how happy I am that you’re my dad. I’ve a lot of heros that I look up to in this world. More are being added each day but no matter who else makes it on my heroes list, you’ll always be number 1.

Thanks for all the love and sacrifices you make for our family. You’ve always tried to give us all that we need. Our family might not be materially wealthy but we’re extremely rich because we have you.

I pray that God blesses you with a lot more years to come.

Happy birthday to a great dad!

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15th Infusion

The 4th of July marked my 15th infusion of Myozyme. As each infusion passes I’m amazed at how far I’ve gone. It seems like it was just yesterday that we started the 1st.

I don’t really know what to write anymore being that each infusion runs pretty much unventful. Don’t get me wrong, I like it that way. I’m grateful that I have nothing “eventful” to write about.

The 15th started out pretty much the same. Checked in the hospital the night before. Oh, for the first time we repeated a room. For the past fourteen visits we’ve managed to get assigned a different room. The 15th marked the first time we repeated a room. Hey, it was bound to happen.

I guess the highlight of the night was the food. We’ve tried a lot of fast foods restaurants already and was getting bored. Thankfully I saw the flyer for Mexicali. We tried that. Mexican food… yuuummm..

The infusion day started out pretty well. Got up at around 7 a.m., we ordered breakfast. I had pancakes and sausages from McDonalds. Infusion days usually are times that I get to eat fastfood. I really don’t like hospital food. I just can’t stand it. I feel bad enough as it is being in the hospital, then it’s compounded by hospital food. Not good…

Dra. Lani came back from her vacation. That’s always a good thing. I like her a lot. No.. not in that way. I like her a lot as a doctor and person. She’s always cheerful and such a nice person to be around with. I look forward to seeing her during infusion days. Don’t get me wrong, that goes for my other doctor too. I love seeing her as well. It’s always a fun time with them around.

We started a bit earlier than usual. Although as always it took a few tries to get the I.V. line in. If you look at my hands now, you’d think I was a druggie. From the countless needle marks on my hand. Let’s see, 15 infusions and on the average it takes about 2 tries to get the I.V. line in, that’s around 30 needle marks. Luckily not all of them have scars. Some have disappeared already.

We finished around 2:30 with the infusion proper. I had lunch and spent the remaining time chatting with the doctors. We also brought cake for Dra. Estrada since she celebrated her birthday the week before. It’s the least we could do for her kindness and excellent care.

We left the hospital around 5:30 and was home before 7 p.m.

A great visit as a whole. No untoward incidents, a nice quite and fun visit.

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Superman Returns

!/images/19.png (Brandon Routh as Superman)!

It’s a return for both Superman and I. Well.. sort of.

For the man of steel it’s his comeback to the big screen. As for me it’s my comeback to watching movies on the big screen. More on this later. First let me tell you what I think about the movie.

The movie was good. Not great but good. I loved the fact that Brandon Routh looks so much like Christopher Reeve. The effects were great. What made it great were the subtle things. Stuff that we took for granted. Like the fact that this time when Superman flies his hair gets ruffled and messy. I like the subtle changes to his suit. It still remained similar to the original suit but with small details. Like the graphite like texture to the “S” as well as his new boots.

Kate Bosworth is hot.. A tad on the thin side but hot nonetheless.

The story was ok. I won’t talk much about it for the benefit of the people who haven’t seen it.

As for my return to the movie house, it’s been a long time since I’ve been able to watch a movie at the theaters. Over six months I think, if not a year. I’ve been having a hard time sitting on my wheelchair for extended periods of time prior to starting Myozyme. So I hardly watched movies at the theater. Add to the fact that I had to bring my Bi-Pap along.

Now things are better. I do have to bring my Bi-Pap but I’m able to sit for extended periods. Enough to last the length of the movie. That’s fantastic. It’s been awhile since I’ve been able to see a movie with my family.

So there you go. Superman and I have returned to the movie house at least…

Oh one thing Superman and I have in common.. We both have a thing for…. I’ll keep that to myself.. Hahaha.

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How To Help

Several people have talked to me, emailed, sent messages asking how they can help. Well there are several ways that you can help. But first, determing how you can help means asking yourself you you want to help. I’m personally advocating for several organizations not just asking for help personally. You can pick from these and help out any which way you can.

You can help the ff:

h2. PSOD (“Philippine Society for Orphan Disorders”:http://www.psod.org.ph )

The PSOD is the organization that we recently launched. It aims to help people with orphan disorders such as Pompe’s Disease, Gaucher’s Disease, Maple Syrup Urine Disorder and others. The goal of the PSOD is to create awareness for orphan disoders, develop a national registry for the diseases, support research and help in policy formation.

The PSOD is a new organization and we’re at our “growing pains” stages. It will evolve over time and hopefully with people’s help it can help improve the quality of life for people with orphan disorders here in the Philippines.

If you want to make a donation to PSOD or have any ideas on how to help please send an email to “info@psod.org.ph”:mailto:info@psod.org.ph or send me an email and I’ll make sure they receive it as well.

h2. AMDA (“Acid Maltase Deficiency Association”:http://www.amda-pompe.org )

Acid Maltase Deficiency is also another name for Pompe. The AMDA has been at the forefront of the battle against Pompe. It’s one of the leading patient groups for Pompe and responsible for helping push the advancement for Pompe research and treatment.

I belong to the AMDA and I as well as countless patients owe a lot to the AMDA.

If you want to help the AMDA you can go to their “website”:http://www.amda-pompe.org and make a donation. There’s a paypal donation button there that you can use to donate.

h2. Fight Pompe

If you want to help me personally I would also appreciate it. I’ve thought of several ways you can.

*Fight Pompe T-shirts* – I’m selling some shirts at my “CafePress Store”:http://www.cafepress.com/fightpompe you can buy a shirt there. Profits from the t-shirts will go to helping me Fight Pompe. If you want to help me, why not get a shirt out of it. The shirts also help create awareness.

*Simple Donation* – Don’t want to buy a shirt and you just want to send a donation? That’s fine too. I’d appreciate that as well. Just send me an email or leave me a message here and I can give you options on how to do it.

*Spread the word* – Just by helping spread the word about Fight Pompe and getting people to read my blog is help enough. The more traffic I get the more people will be aware about Pompe. Awareness is the first big step against the fight.

All the help I get from Fight Pompe will go to funding medical expenses and other related expenses that help me fight this disease not just for me but also for other people. I’ve always believed that before I can help others I also need to help myself so I can be strong for others.

2006 has been both an exciting as well as a hard year. Exciting because of the treatment I’m getting. Hard because it’s also an expense that not only takes it toll on me personally but my family as well. I’m not complaining though. It’s been great.

The rest of the year holds so much promise not just for me but for other Pompe patients and the PSOD. I hope that we get to accomplish a lot.