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For the first time in years I found myself wearing shorts last Sunday. I’ve always worn jeans or pants everyday for the past several years. Even if I’m just staying at home. I do so because I don’t like looking at my legs. They’re too skinny.

Ever since I started the enzyme replacement therapy, I feel that I now have a legitimate chance at improving my condition. Hence on that particular Sunday, I told myself, “What the heck!?!? it’s time to wear shorts again”. As much as I hate looking at my legs, I turned it into motivation to try to get them bigger, by eating more and exercising harder.

So from now, on weekends, for so long as there are no guests coming over, I’ll be wearing shorts to remind me of the ongoing battle I have. One day I’ll be able to look at my legs, smile and be happy with how they look…

Fight Pompe finally moved to it’s own domain. Like any other move, it will take some time for things to look how I want it to. So be sure to check in often as the next few days will bring more changes. For now please bear with me. I know the site doesn’t look as good as the previous one but that’s temporary. I’m currently building the new template.

A new home for a new year. I do hope that this change brings about good things. Till next time.

Fight Pompe!

As the the year comes to close, I wish everyone a Happy New Year! 2005 has been kind to me and I hope it was the same for you. I look forward to 2006 and pray that it will be a great year if not greater than 2005. Each new year brings us hope and opportunity that better things will be in the horizon. May God bless us all. Here’s looking towards a fantastic 2006!

Fight Pompe!

2005 is coming to a close and it’s that time of the year to reflect on the the year that was and examine the blessings that have been given.

To be honest, at the onset of 2005 I felt sad and wasn’t really looking forward to it. Why? Well, December 2004 I found out that a project that we were working on will be cut short. For what reasons I don’t want to speculate anymore. It was sad because I really enjoyed working with the people on the team. People I really respect. Apart from that I was making good money with the project which afforded me a chance to own one of my dream gadgets, a Powerbook. So 2004 didn’t close all that well with the loss of that job.

In January 2005, I was at a assembly. My friend gave a talk and I remember her saying that while 2004 was great, 2005 promises to be even greater. With her words in my mind, I started to be hopefull that 2005 would be great. You know what? It did turn out great. Not exactly what I had in mind but fantastic nonetheless. Let me recap the highlights of 2005.

1. *Various speaking engagements* – I was fortunate enough to start out the year with some speaking engagements. I’ve always made it a point to accept speaking engagements because it provides me a venue to share my message across. I’m also flattered that people actually want to listen to what I have to say. In January I had the chance to talk at a major event called “Pinoy Unleashed” produced by Unleash International. This was an event to launch a programe that they have. It was also aimed to inspire people to maximize their potentials and become better persons. Believe it or not I was in the company of very important and successful people such as Tony Tan Caktiong, founder and chairman of Jollibee, the number 1 fast food chain in the Philippines. and many other distinguished men and women who spoke at the event.

In relation to that I was also invited to talk at Jollibee’s annual convention on February. I was happy to have gotten a chance to be part of that event. I saw why Jollibee is considered as one of the best company’s to work for in the Philippines.

For a second year in a row I was also a speaker at the LEAP Congress. An event put together by Innerwheel Club of Makati North. The goal of the event is to inspire the youth to become leaders.

Apart from this three major events I was also fortunate enough to speak for CLPs of Singles For Christ. This has been something I’ve been doing regularly for the past few years. A way of serving God and giving back to the community.

2. *Sparkplug Studios* – In June 2005, we transitioned to a new company that I, together with my brother and some other friends put up. It’s a design company that focuses on Web and Graphic design. We also plan to focus on User Experience. I’m very happy with the birth of our new company, especially because it gives me an opportunity to work with my brother and becoming an entrepreneur.

3. *Distinguished Alumni Award* – My alma matter, DLSU-College of Saint Benilde bestowed upon me the honor of being the first ever recipient of the Distinguished Alumni Award. This came as a total surprise to me. There are a lot of other qualified candidates for this award but somehow they chose to give it to me. I am forever indebted to my school for provideing me an education and for accommodating my special circumstance. I am what I am today in part because of my school.

4. *Writing for MPH* – This year I fulfilled one of my dreams of writing on a much more regular basis. I’d like to thank the people behind MPH Magazine, a local mobile tech magazine for providing me the opportunity to write for them. It has truly been a wonderful experience.

5. *Myozyme* – The biggest blessing this year came at the very end. A photo finish of sorts. On Dec. 20, 2005 I was given my first infusion of Myozyme. The enzyme replacement therapy being developed by Genzyme for Pompe patients. This is indeed a blessing. It’s something that I’ve been waiting for 18 years. I’m thankful to the people at Genzyme, the doctors at the UP-NIH for putting this together and giving me a chance at a better life.

Apart from these major events this past year, there have also been other blessings this year. Such as the chance to develop new friendships. I’m thankful for the new people I met at PhilMUG, whom have been so warm and welcoming. The people from DLSU-CSB, Kato, Chong and the rest.. Jeri, Kevin’s assistant, I’m happy to have met you even if it’s just online. I’m also thankful for developing friendships from people I’ve known before but didn’t really have the chance to get to know them well till now. Peopls such as Tiffany, Cricket, Nikki, Jayvee and Kevin. I am also grateful for the continuing friendships that I have. There are too many to mention but you guys know who you are. My life is better with you in it.

I am thankful for my family. Their continuing presense, love and support make my life, the great one that it is. Sure there are many challenges. It’s a difficult life especially dealing with Pompe but my family, friends and colleagues make it a worthwhile life to live.

Most of all I am thankful for God’s continuing love. He has always been there for me and has never left my side. He has given me a lot of gifts. I am blessed.

As 2006 approaches, I am thankful for the year that was. I’m also looking forward to the year that will be. With Myozyme, I am hoping that a better future is in store. I am praying for more opportunities to share my blessings with other people. There’s exciting things in store for 2006.

I was lying in bed one night and for some reason I remembered Jose. A fellow Pompe patient, I was privileged enough to get to know Jose through the GSDnet mailing list. He’s one of the good fellow’s who’s always generous with his advice and opinion.

On Nov 6th 2002, Jose passed away. From what I know, his vent broke down and no one was with him during that time. He eventually suffocated. Tragic…

Although I haven’t met Jose in person, I still felt like I lost a friend. There’s a certain kinship I guess with fellow Pompe patients. Jose shared his life with fellow Pompe patients and so in a sense I felt like I knew him well.

Jose’s death shook me a lot. It could easily happen to me. It’s such a tragedy to lose your life in that way. It doesn’t make sense at all…

I’m lucky that I have a lot of people around me. Still the fear is there. Sometimes I lie in bed and find myself thinking that what if my machine failed and no one is there… I soon find my heart racing because of the thought.

I guess this is something I together with other Pompe patients have to live with. While I have this fear, I try not to let it take over my life. I take the precautions in order to prevent it but at the same time I try to live my life as normal as I can.

Jose, if you’re reading this. I’m thinking of you buddy… I hope you’re happy up there and Pompe free. I’ll see you up there but hopefully not for a long time… I still have a fight down here and I don’t intend to give up anytime soon.

Fight Pompe!

It’s Christmas time once again. I just want to wish all a merry, merry Christmas. Let’s not forget the true meaning of this holiday. It’s the day that our saviour Jesus Christ was born. A truly wonderful gift that God has bestowed on us. Let us remember Christ’s birth as we celebrate this holiday.

More than the gifts, celebrations and other things.. Let us remember that the true essence of this holiday is love. Celebrating the love that God has for us. Let’s also celebrate our love for each other.

I hope that this year has been great for you. I hope that you have been blessed as much as I and my family have, if not more.

From my family to yours, a truly merry CHRISTmas!

In a recent phone conversation with new friends of mine, I was asked the question “What would you tell other pompe patients?”. The question mostly pertained to newly diagnosed patients but I think it also applies to all patients. Well here’s what I would tell them.

The first step to solving a problem is acknowledging the problem. In this case it’s Pompe. A patient must really learn to accept his diagnosis. There’s no sense running away from it. It’s not a problem we can run away from. The sooner we accept it, the sooner we can deal with it.

The next step would be education. Try and find out as much as you can about Pompe. Browse the web sites, seek help from professionals, talk to other patients and your family about it. The more you know about it, the better. There are things you can do to try and slow the progression until the time comes that you can receive ERT.

Now comes the time to channel your energies to the positive aspects of your life. Never under estimate the power of positive thinking. A positive attitude is key to having a better life.

Don’t let Pompe define your life. It’s not who you are. It’s just a part of your life. It doesn’t define your being.

Use this situation as a chance to do something great. There are lessons to be learned in dealing with Pompe. Use those lessons to help improve your life. Use it as a chance to bring your family and friends closer together. The biggest lesson Pompe taught me is to value the simple things in life. Often times, the simple things are the important ones. Such as spending time with family, appreciating the world around you, being thankful for what you have, etc..

Focus on the things that you have and not on the things that you’ve lost. There’s no sense in dwelling on the things you’ve lost. Aa the saying goes, “Don’t cry over spilt milk”.

Finally, whatever the end holds for us is not as important as the journey we took to get there. In the end I might lose to the fight against pompe, or I might win. I honestly can’t say until I reach the end. What I do know is that the journey is more importnant than the destination. As long as I gave it my all, lived my life to the fullest, I can’t lose. Others can do this as well.

So that’s my message. What do you think?

Fight Pompe!

It’s been several days since I got out of the hospital for my first infusion. I’ve had time to really think about what has happened. I really didn’t want to think about it till the infusion actually pushed through. Now that it has, I’ve reflected on the implications that it will have on my life.

I really don’t know to what extent Myozyme will have an effect on me. All I can do is hope for the best and give it my all and we’ll see how it turns out.

I fully understand that Myozyme won’t be the answer all by itself. I need to put a lot of work along with it. Work such as physical therapy, proper diet, adequate rest, etc.. All of these together will hopefully give me the best result that is possible. Of course above all that is the faith that God is with me and that if he wills it, I will get better.

Now therein lies the problem. All of those I mentioned above will require a shift in how I live me life. Prior to this I basically just worked and health really took a back seat. I needed to work because that’s the way it is here where I live. Life is hard and everyone needs to work to get by. While my family supports me, I can’t just rely on them. I need to do my part.

I’m starting to think of ways on how I can devote my time more to getting better. I’m thinking of trying to devote the coming year 2006, to putting more emphasis on health rather than work. This means I might have to take a break from work.

It’s good that I partly own the business I have together with my partners but then again it’s not a big business and I’m not sure if I can afford to give up my job. Since getting better has its expenses.

I don’t want to be a “burden” to my family and have them shoulder everything. They’ve really sacrificed enough.

So….. what to do, what to do?!? I’m still in limbo. I need to find a solution to this. Any ideas?!? If you do, please let me know. What I’m sure of, is that health has to come first. I really need to put effort into this or Myozyme will just be wasted on me. I don’t want that to happen. Not when a lot of people have put in good effort to bring Myozyme to reality.

I hope 2006 will be a good one. If 2005 is any indication, the next year promises to be great. I’m really looking forward to seeing how it turns out.

Fight Pompe!

Tuesday is D-Day or more appropriately “The-Day”. It’s our targetted date for the Myozyme infusion. Unfortunately it seems like we’re poised for a photo finish. As of Friday afternoon, the Myozyme was still at customs waiting to be released. The papers for the Myozyme’s tax exemption is still being completed. God, it’s been two weeks if I’m not mistaken since the Myozyme arrived here in the Philippines. Sometimes I really wonder how our government gets anything done.. They’re so inefficient and unorganized… or plainly corrupt. Of course I don’t speak for all. There are great and honest people working for government. That’s why I’m still hoping and praying that the Myozyme gets released on time.

If everything goes as planned, I check in the hospital monday afternoon or late evening. Spend the night there and have the infusion first thing in the morning. Some good points to note, I don’t need any additional tests. The ones I got almost a month ago are ok already. We have an all systems go.

My mom is very excited. While it might seem that I’m not from the outside, I am. Although because of the disappointments I’ve gone through in my life, I always take things with caution. I’m trying not to get overly excited as not to get disappointed if things don’t go as planned. I do know that it will happen if God wants it to happen. I just need to be patient.

Well I’m keeping my fingers, toes, eyes and everything that I can crossed. Here’s hoping we make it on Tuesday.

Fight Pompe!

Well… not a real one! But a great one nevertheless. In more ways it’s better than the real thing.

I got home last monday feeling a bit bad. I was tired from a visit to the doctors office. For some reason I wasn’t really feeling well. I get tired easily these days. Upon arriving home, I opened my email to check for new messages. I got an email from a Dr. friend. The message read “This morning my sister delivered to your apartment a package. It is from the 3 of us…” referring to some colleagues of her. I asked the people at home if there was a package for me. There was!

I received a gift with a card. I opened the card and the message went something like.. “We couldn’t afford to give you the real thing…” I then went on to open the gift… Inside was a Ferrari F430 diecase model by Hot Wheels. Wow!

There are two material things that I’m passionate about, Ferrari and Apple Computers. I collect Ferrari model cars since I can’t afford the real thing. Not that I have a huge collection. I think I have 5 or 6 but I do love’em.

I was really touched by the gift. In fact I think the model car is indeed better than the real thing. Why? At a local cost of somewhere around 17 million pesos or a little over 300,000 dollars that money is best used for something else. Like getting medicine for sick people. Even if I had that much money I’d probably settle for a simpler car and just use the money for something else.

Don’t get me wrong I love Ferrari’s in fact I’ve even fulfilled my dream this year to ride one but I don’t think I’ll ever own one.

So in many ways the model car is just perfect. Plus it’s really the thought that counts. I asked my Dr. friend who she found out I like Ferrari’s. She mentioned that on a visit to my house, I mentioned in passing that I liked Ferrari. She never forgot. Awww…… Sniff.. sniff..

Why is this related to Pompe? Well she works with the company making the ERT. Plus more than that, it was because of Pompe that I got a chance to meet her and her colleagues. I’ve gotten to meet a lot of great people because of Pompe. For that I am blessed.

Fight Pompe!