Farewell To Our Fallen Hero

I woke up to the sad news that Sec. Robredo’s body was found inside the plane. I’m deeply saddened about the demise of a man I have not met but only know through reputation. That does not diminish from the fact that the Philippines lost a great man. It’s also a sad coincidence that his body was found during the death anniversary of another great Filipino.

We will only truly lose Sec. Robredo if we do not take up his cause and follow his example. A true servant leader, he embodies what a great Filipino public servant should be.

Paraphrasing from Tony Meloto “When a hero falls from the sky, many others will learn to fly” A true Filipino hero fell from the sky. Let it be our duty to learn to fly and soar to the heights that Sec. Robredo dared to glide.

God speed Sec. Jesse. You will be missed not only by your family but by the entire Filipino nation. Take heart that a whole nation is in tears because of your early demise. It means you are loved and cherished. In the world of politics very few people have the same respect we have for you. Look after the nation from heaven. We will see you again some day. Dios Mabalos!

3rd National Rare Disease Week

As a person who grew up with a rare disease, I have first hand experience with the challenges that someone in my situation has to face daily. Apart from the health struggles, there are numerous other problems you have to face.

We live in a poor country where support for people with rare diseases is limited. The health care system is inadequate at best. There’s no access to proper diagnosis much less the actual treatments. Government has done so little in the past to address these issues. However I am hopeful that it’s changing. We have seen some support from government agencies although it’s still very lacking but it’s a good step in the right direction.

I was very lucky to have been born into a family with moderate means. My parents are both middle-class and they’ve worked hard to provide me access to healthcare as well as the other necessities I need such as education, food, clothing, etc. Not a lot of patients here in the Philippines are as lucky as I am.

Together with some doctors and other concerned individuals, we put up the Philippine Society for Orphan Disorders to help advocate for patients, especially children with rare disorders.

I am taking this chance to ask you to help us with our cause. Join us as we celebrate the 3rd National Rare Disease Week. We hope that more people become aware with the plight of people suffering from rare diseases. People who don’t have anyone to help them with their struggles.

We hope that you support us in our fight. Either by helping us promote it or better extending your generosity and helping out the patients and the PSOD by donating. Each peso helps in advancing the needs of patients with rare disorders.

Read the about the “3rd National Rare Disease Day”:http://www.psod.org.ph/ver2/news/3rd-national-rare-disease-week-feb-22-29.

The PSOD also joins the international community in celebrating Rare Disease Day on Feb 29, 2012. For more details on Rare Disease Day please visit “www.rarediseaseday.org”:http:www.rarediseaseday.org

Watch the Rare Disease Day video

Rare Moments Exhibit

rare moments presentation by patients

Last August 14, 2011 The “Rare Moments Photo Exhibit” went on display at the SM Megamall. We also had a formal opening on the 15th, with special guests in tow.

The Rare Moments Photo Exhibit is the culmination of the Rare Moments activity, a project of the PSOD in partnership with Photography with A Difference, Canon A Team, Canon and SM Programs for Disability Affairs.

The first part of this activity was a “worry free day” wherein 13 children with rare diseases along with their families were treated to a day of fun at the Manila Ocean Park and Museo Pambata. The people behind these two establishments graciously opened their doors to these children and their families.

The children were treated to an awe-inspiring display of the underwater creatures housed at the Manila Ocean Park. After which, they proceeded to the Museo Pambata where they were exposed to various fun children activities and displays.

The amazing photographers of Photography With A Difference and the Canon A Team captured the whole day. Mr. John Chua, a famous photographer, heads this group.

The wonderful images that resulted from the worry free day went on display at SM Megamall this week. The goal of the exhibit is to help create awareness for children with rare diseases.

A formal opening was held last August 15, 2011. A simple program was prepared. Among the people who attended were special guests from the Philippine Society for Orphan Disorders partners such as Genzyme and Mead Johnson. Also there were members of the Canon A Team, Photography with A Difference, Canon as well as some of the top brass of SM Supermalls, host to the exhibit.
Part of the program was a presentation from the children with rare diseases and their parents. This presentation number was their small way of thanking donors and partners for all the support they continue to give the PSOD and their patients.

I was also tasked to give a message of thanks on behalf of the patients of PSOD. This is part of my work as the patient advocate for PSOD. You can read my full message below.

The whole event was a success. The patients and their families had a wonderful time during their worry free day and the stunning images that resulted from that will forever commemorate their joy.

delivering a message during rare moments

==========

Good afternoon distinguished guests, ladies and gentlemen.

Life is a series of moments. Most people will have a lifetime’s worth of precious moments.

For patients with rare diseases such as myself, these moments are less certain. So it is important that we take these brief moments and create memories to last a lifetime.

When I was told about the idea of having the “Rare Moments” exhibit, I thought it was a fantastic idea. A worry free day for patients and their families, captured by brilliant photographers really appealed to me.

Families dealing with rare diseases face not only a daunting health challenge but also economical and psychological adversities. It certainly takes a toll not only on the patient but the whole family as well.

I was fortunate enough to be part of a family who has moderate resources and as such I am able to experience moments of happiness that I will carry with me for the rest of my life. Some aren’t as lucky.

Some patients and families hardly have enough for their basic needs. They are not able to enjoy a simple family day at the mall or a picnic at the park, moments that most people take for granted.
It may be trivial to some but to the families and patients of PSOD, those type of moments are the ones that last a lifetime.

In my experience, the most difficult part of dealing with a rare disease is not so much the physical challenges that go with it but more often it’s the emotional and psychological adversities that we are faced. We have doctors, nurses, pharmaceutical companies that help us deal with the medical aspect of the disease, but I am also glad that we have people like you who help us deal with the emotional and psychological part. It is through people like you who help nurture our souls.

A worry free day comes too far and few in between for our patients and their families. Some experienced it for the first time. So to us it is certainly a big deal. We would like to thank the people from Manila Ocean Park and Museo Pambata who have graciously opened their doors to accommodate some of our patients and their families. You have given them an opportunity to be filled with wonder and awe.

The worry free day was great by itself, but it’s been made more special because our talented friends from Photography With A Difference, Canon A Team and Canon captured those precious moments.

As we formally open the “Rare Moments” exhibit, please know that these stunning images and the memories behind it will be forever cherished by the patients and families that participated in it. Each image tells a story of hope and happiness. An image that captures a brief moment in time wherein the patients and their family members forget that they are facing tremendous challenges. For a brief moment in time, they are like most families who are simply enjoying time together.

We wish to express our thanks to the people of SM Supermalls, for giving us a venue to share these wonderful images with other people. Thank you giving us a stage to show the world that while we are going through tough challenges, we can still face it with a smile. A special thanks goes out to SM Supermall’s owners and top management for creating a program that caters to persons with disabilities. For creating a culture of inclusion that is carried out from the top managers all the way to the service personnel who man the malls everyday.

Words can’t express the gratitude we feel. Some of the patients and their families have prepared a presentation for you, our distinguished guests. But before that though, please allow me to borrow a few lines from their presentation. It goes something like this.

Kung ito man ang huling awiting aawitin
Nais kong malaman mong
ika’y bahagi na ng buhay ko
At kung may huling sasabihin
Nais kong sambitin,
Nilagyan mo ng kulay ang mundo

Kasama kitang lumuha
Dahil sa‘yo ako’y may pag-asa

Loosely translated in English it says.

If this is the last song I will sing
I want you to know
That you have been a part of my life
And if I have one last thing to say
I want to say
You have brought color to my world

You were with me when I cried
Because of you I have hope

It is because of people like you that patients, especially children with rare diseases now have reason to hope. Your love and support have encouraged us to keep fighting. We are here because of you. For that we are eternally grateful.

On behalf of the patients of the Philippine Society for Orphan Disorders, we humbly thank you from the bottom of our hearts. Thank you for helping us create “Rare Moments” that we will carry throughout our lifetime. We thank you for helping us not only live but helping us have a life.

I hope you enjoy the presentation number. Thank you and good afternoon to all.

R.I.P. Randy Pausch

Picture of Randy Pausch

On July 25th, 2008 the world lost another great man. A wife lost a good husband. 3 kids lost a wonderful father.

Randy Pausch was one of the most inspiring people I’ve ever heard speak. Granted it was only through the internet and tv but nonetheless his words resonated so well that it’s been stuck with me ever since. I’m already a very positive person but I was still blown away by this man.

He gained fame from his “Last Lecture”. A presentation he gave in front of a jam packed audience over at Carnegie Melon University where he was a professor at.

The “Last Lecture” was a presentation on how to live life well. There’s a tradition for professors at CMU to give a hypothetical last lecture. In his case it wasn’t hypothetical. He was diagnosed with pancreatic cancer and was give months to live. Instead of wallowing in self pity, he chose to live the rest of his life as best as he can. He wanted to leave a legacy for his kids. Something that when his kids look back on they can be proud of their dad.

Randy Pausch finally succumbed to cancer on July 25th ending the battle with cancer.

To Randy, I did not have the pleasure to meet you in person but know that your words will live in my heart forever. You’ve managed to inspire a lot of people all over the world, this person included. You have made the world a better place.

I hope you’re happy up there in heaven. I hope to meet you there someday. Although I hope that it isn’t soon.

Read the story of Randy’s legacy, watch the “Last Lecture” here and buy the book here.

Hello Again!

So I didn’t quite live up to my last post. Things have just been crazy lately.

Some updates…

On my infusions… They are going great. We’re getting to a point that we’re already comfortable with the routine that unlike before that the doctor stays with me the whole time, now he just makes sure it gets up to the highest rate and then he can go about his other duties.

That’s not to say we’re getting complacent. There’s still a nurse that oversees the whole infusion.

So far, so good. Let’s hope it stays that way.

On work… There might be some major changes. I’m actually at a crossroads. Well not quite there but almost. I’m thinking about what to do in the future. Where I’ll be happy and fulfilled at the same time find something that will help secure a future for me and hopefully a family as well. A guy can hope can’t he?

On personal life… Things are a bit boring lately. My life revolves around my treatment, work, PSOD and Singles For Christ. I’m not complaining that it’s boring. Sometimes boring is good. However I do need to do other things to add a bit of excitement to my life.

On a sad or rather disappointing note, one of my assistants/aides resigned. I always feel bad when that happens, especially now since I’ve gotten so used to him and that my life was actually going pretty well. I have a temporary aide now for about a month but I’m on the look out for a permanent one. Wish me luck on that.

I’ve also been having trouble with one of my BiPap machines. The new one at that. That really sucks. I’ve already sent it to HK. Poor dad, he had to fly all the way to HK to get it fixed. It didn’t turn out well. I guess it’s because it was a rush job so the service center didn’t really get to test it fully. I can’t send it back yet since no one is going to HK soon. Oh well. I’m trying to plan for future machines. I need to see if I can get some new ones.

There are other things that have been going on. I can’t recall all or I’m just too tired to post it now. Anyway hopefully I’ll be posting more.

The Year That Was (2007)

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.

Featured on GMANews.tv

Tita Valderama wrote a nice feature about me on the “GMANews.tv”:http://www.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”:http://www.gmanews.tv/story/70765/Dickoy-Magdaraog-turns-disability-into-this-ability.

Thanks Tita for the wonderful article.

PSOD Partners with Ayala Foundation USA

!http://www.fightpompe.com/images/40.png (Ayala Foundation USA Logo)!

I’m very happy to say that the “PSOD”:http://www.psod.org.ph has started its partnership with “Ayala Foundation USA”:http://www.af-usa.org/. The “Ayala Foundation USA”:http://www.af-usa.org/ has graciously allowed us to use their facilities and resources to accept donations from people in the United States.

Donations sent to the “PSOD”:http://www.psod.org.ph via the “Ayala Foundation USA”:http://www.af-usa.org/ is tax deductible.

The “PSOD”:http://www.psod.org.ph 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”:http://www.psod.org.ph out, please donate via the “Ayala Foundation USA”:http://www.af-usa.org/. Please specify that the money you’re giving is for the “PSOD”:http://www.psod.org.ph. 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”:http://www.af-usa.org/be_a_donor.asp
“Projects page where PSOD is listed”:http://www.af-usa.org/projects.asp

BiPap Crisis Over I Think

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!

My Dad and I On Genzyme’s 2006 Annual Report

The title says it all. I wrote about the “photo shoot”:http://www.fightpompe.com/article/132/so-thats-why-models-are-paid-a-lot 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”:http://www.genzyme.com/corp/investors/fin_fact.asp.

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”:http://www.genzyme.com/2006_ann_rpt/2006_annual_report.pdf 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.

!http://www.fightpompe.com/images/37.png (Photo that came out in Genzyme's 2006 Annual Report)!

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…