In a few hours 2007 will pass and we’ll usher in 2008, a new year. I’m taking the chance to look back at the year that was.
2007 started out rocky for me. I said goodbye to a very important relationship and while we’re friends, I don’t think it will ever be the same. At that time I honestly thought that I would not be able to recover from that loss. I think most of us think that way when we’re in the middle of that experience. With the help of God, faith, family and friends things are much better now. While I’ve moved on I don’t think I’ll ever be completely over it or fine with it. Although never say never.
Things always have a way or working out. There’s a popular saying that goes something like “life is like a wheel, sometimes you’re up and sometimes you’re down”. From the gutter where I was, life has a way of picking you up. Good things came my way.
My mom and dad celebrated their 30th wedding anniversary. A milestone by any relationship’s standards. I’m glad to have parents like them. They show me the meaning of true love. While their relationship is not perfect, no relationship is they’re trying their best and have done great so far.
I also got a chance to be featured in Genzyme’s Annual report. They sent a wonderful photographer named Chris Kirzeder over to Manila to take my picture. That was quite an experience.
February came and we lost one of our classmates. J.P. tragically passed away when he was a victim of a stabbing incident. It’s always sad when people die needlessly. It’s sadder when it’s someone you know and shared a experiences with.
I was nominated as a finalist for “The Philippine Blog Awards” last March. Unfortunately I did not win. It’s well and good because the winners deserved the win. I was just happy to get the nomination.
My 30th infusion came on April. 30’s a big number and I was just happy that after 30 infusions I haven’t had any bad incidents with it.
Genzyme’s annual report also came out in April. I got a kick out of seeing my face on a publication for an international company. I think it came out well, thanks to the photography skills of Chris.
May saw some problems again for me as my Bi-Pap machine went on the fritz. Luckily I was able to have it repaired and eventually even added a new machine to my arsenal. I now have 3 Bi-Pap’s that I rotate. When you’re dependent on a machine for breathing, you tend to get paranoid. 3 machines are good safety measure.
I had quite a scare in June. I thought that something was wrong with my heart. Turns out that my Bi-Pap just needed adjusting. Everything turned out after several trips to the doctor. I’m happy that up to now, I’m feeling good with my new settings.
I feel bad that the second half of the year saw me blogging less. I got busy and found little time to write. It’s not to say that the second half of the year was uneventful. Far from it. It was still quite an exciting year.
The second half saw me attend my first SFC conference in a long time. Add to that it was the first time I’ve gone on an out-of-town trip without my parents in years. I’ve always been afraid the last couple of years to travel without family because of my health situation. I felt I was doing well enough that it would be safe for me to do so. So I did. I had a blast!
It was also during the second half of the year that I was presented with the chance to participate in the village elections in a way that I’ve never done so before. I actually ran for “Bargangay Kagawad” or as a member of the village council. It was a great experience and I met some great people. My running mates were really a good bunch of people and I was happy to get to know them. Unfortunately we all lost to the incumbent. Still I will always treasure that experience. I’ve learned a lot from it.
It was this year that I also turned 30. If you know me and my story, you’ll know how important that number is to me. When I was growing up and was first diagnosed with Pompe disease the doctors we consulted earlier on told us that I might not live past the age of 30. So, that stuck to my head. It seemed at that time that it might be the proverbial finish line for me. With Myozyme, the treatment I’m getting, I’m feeling much better and I see myself really living past the age of 30. The past 30 years of my life have been great! Not perfect but great nonetheless. I’m truly thankful to God for giving me a wonderful life, loving family and great set of friends. I’m praying that the next 30 years or so of my life will even be better.
I was given the great honor of being named one of the 5 most inspiring PWD (Person With Disability) entrepreneurs for 2007. The award was given by the Go Negosyo group, an organization that is promoting entrepreneurship. I’m not sure if I truly deserve the honor but I’ll take it nonetheless.
These are just some of the things that have happened to me this past year. There are a whole lot of other things that transpired but I’d rather not bore you with it. Needless to say that as a whole it’s been a great year. I have a lot to be thankful for. 2007 has been good.
Tita Valderama wrote a nice feature about me on the GMANews.tv web site last November 29, 2007. I didn’t get to read it until a friend pointed it out to me. That was a two weeks ago but I only to blog about it now.
Normally I’m hesitant in talking about articles about me because well it will sound like I’m bragging. That aside, I’m writing about this particular one because it’s really worth mentioning. The article is well written. Even if I wasn’t the subject I’d still write about it.
So please if you have the time check out the article here.
Thanks Tita for the wonderful article.
I’m very happy to say that the PSOD has started its partnership with Ayala Foundation USA. The Ayala Foundation USA has graciously allowed us to use their facilities and resources to accept donations from people in the United States.
Donations sent to the PSOD via the Ayala Foundation USA is tax deductible.
The PSOD is the organization we help put up to assist People with rare disorders here in the Philippines. Our country has very limited resources and people with rare disorders have no access to these limited resources. We’re looking to change that.
Everyone has a right to live. It doesn’t meant that if you’re afflicted with a rare disorder that you have less rights to medical treatments and resources. Unfortunately most resources are put to diseases that are more common. There’s nothing wrong with that. But there’s also nothing wrong with helping people who are in the minority.
If you’re residing in the United States and want to help the PSOD out, please donate via the Ayala Foundation USA. Please specify that the money you’re giving is for the PSOD. The money you’ll be giving will be put into an endowment fund that will help fund our programs for the years to come.
Thank you in advance.
Links to AFUSA
Donor Page
Projects page where PSOD is listed
Well, it’s been a really long and weary week. I haven’t been able to sleep well the past week. I was literally like a zombie during the day. Half asleep and half awake. For some reason the good machine I’ve been using is still giving me trouble sleeping. I still wake up with a headache and feeling really really tired. I’m not sure if it’s the pressure setting or if this machine isn’t calibrated properly. The display indicator tells me that the pressure is set to the one prescribed to me. So it should be fine but it’s not.
The broken machine has finally been fixed. Thank God! During times of crisis, a person sometimes thinks that God abandoned him/her. However what they fail to see is that maybe God is just working his miracles in the background. Looking back I realized that this is so true in this instance. Let me give the reasons why.
1. Helpful Technicians – God sent me really grate and helpful people during my time of need. It was a long weekend and the service center is closed. But as things would have it, there was a sleep lab open and the GM was there. He’s also an experienced technician so he looked at my machine. He was the one who gave the initial diagnosis as to what the trouble was.
Another technician came on Monday to our house. It was a holiday that Monday due to elections. Yet he still came. This technician was the one who remedied the machine well enough to be usable as a backup. The machine could at least be used as a backup till the parts could be replaced.
I also had another technician do phone support. He wanted to come but his son was in the hospital. Yet he provided phone counseling. As luck would have it, his son was confined in the same hospital I go to. I had a technician in the same hospital the night I spent there. So if anything did happen help was there.
2. Excellent Support – The Respironics machine I was using has great support. Although the regional service center is in HK, still they provided excellent support. They were able to fix my machine in two hours. A rush job which they accommodated given my circumstance. They also replaced the defective parts under warranty.
3. Financial Support – Given my situation I really need redundant systems in place. I don’t live in a country like the United States wherein machines like this are much much more common place and it’s easily rented. So redundant systems are a must. Even if the broken machine is fixed, I still decided to get a new one to serve as a backup to the backup. The problem was it cost an arm and a leg.
Not to worry. There are very kind people who live in this planet of ours. First off, thanks to David from United Pompe Foundation. I applied for a grant from the UPF to fund the purchase of a new machine. They were able to give up to half the cost of the machine. That’s a big chunk of change. So if any of you guys in the United States feel like donating to a worthy cause/foundation please consider the UPF.
Apart from that a lot of people were eager to lend a hand. My uncle and aunt in the U.S. were ready to extend financial support but I had to politely decline this time since they already helped me a lot. My uncle here in the Philippines helped me out with the paintings I’m selling. Christine, a friend of mine and her family was ready to help with the financial costs but I told her I had already completed the finances for the machine. Still the thought was more than enough. My cousin who’s willing to bring the machine home from the states.
4. My Family – Last but not the least my family. My dad, mom and brother all made sure that I would be ok through this problem. My dad went through all the trouble to hand carry the broken machine all the way to Hong Kong and have it repaired there, bring it back to Manila all in one day. He’s also helping me out with the finances for the new machine. My mom who helped me find the technicians and other solutions for this crisis. My brother for taking some of the slack at work. Plus a whole lot of other stuff.
These reasons make me feel that I’m really blessed and that God has used them to make sure I get through this crisis of sorts.
So at this time of writing, my machine is fixed. A new one is also on its way to my uncle and aunt’s place in San Francisco where my cousin is staying. By June 2 the new machine should be here with me and I should have three machines to use.
I’m now praying that the other machine here with me now doesn’t have any problems. When the new one arrives I plan to have this one serviced, cleaned and calibrated.
God, if you’re reading this, thanks. You rock!
The title says it all. I wrote about the photo shoot that I was on a few months back and now it’s finally published. The gruelling 7 hour photo shoot (well ok, ok, it wasn’t gruelling and 2 hours of that were spent having lunch) has finally paid off. Genzyme recently published its 2006 Annual Report.
I knew it was destined to come out some time April. I checked Genzyme’s website recently and the annual report was there already. I eagerly downloaded the PDF version and looked for the photo. I saw it moments after, in all of its splendid black and white glory. Ok, enough drama and exaggeration. To be fair it was a great photo.
The final photo was that of my dad and I. It was taken in Tiendesitas, a local shopping area. It’s an open type of shopping area. My dad was pushing me down a walkway that was lined with stores selling native art and crafts. If I’m not mistaken I was looking at a drum made by an indigenous tribe.
I feel really honored to have been chosen by Genzyme to represent Pompe patients and Myozyme users in their Annual Report. The past year has truly been a blessing since I am able to receive Myozyme and representing patients in the annual report means a lot to me.
Does this mean the start of my modelling career?..... Nah… I don’t think so…
I’ve just been interviewed by Jhay at Four-Eyed Journal. The interview was about being nominated for the Philippine Blog Awards. He started a series of interviews with the nominees of the awards. It was an pleasure doing the interview Jhay.
Read the interview here.
