What Would Jesse Do?

I found myself thinking about Sec. Jesse a lot today. I didn’t expect that a death of someone that never even met in person, a politician at that would have this profound affect on me.

I was sitting with my dad when I found out that his plane had crashed. My dad was catching up with the news on his iPad. He let out a quiet “Oh no” and proceeded to tell us that the plane carrying the DILG Secretary had crashed 500 meters short of the Masbate airport.

I first heard of Sec. Jesse years ago. My dad was helping campaign for former Sen. Raul Roco during his bid for the Presidency. My dad told me about the Mayor of Naga who has done so much for the city. Naga is close to my dad’s heart because it is the city where he grew up. I’ve never been to Naga myself but I’ve often heard my dad and his siblings tell stories about their childhood.

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Look Ma’ I Made It To Rappler!

I wrote a blog post/article last July 14 titled “ThisAbility: 10 Life Lessons I Learned Growing Up With Pompe Disease”. I’ve been thinking about writing this for a long time. The main reason behind it was that I’ve learned a lot of lessons growing up battling a life threatening disease. Lessons that I know are applicable not just to someone going through an illness but also with everyday life.

I initially just wanted to post it on my blog. After receiving favorable feedback from friends and family I realized that I wanted to share it with more people.

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About Juan

My name is Juan Magdaraog. I suffer from the juvenille/adult onset of Pompe Disease. Pompe disease first manifested itself when I was around 10 years old. At that time no one in the Philippines knew what it was. In fact I was misdiagnosed till I was about 15 years old. The first diagnosis was Muscular Dystrophy. It was only when I had a chance to go and see a Muscular Dystrophy specialist in San Francisco that a proper diagnosis was made. The verdict, it was Pompe Disease.

I’ve been dealing with Pompe Disease for quite a long time now. More than 20 years as of this writing. It’s been a tough life. Filled with a lot of challenges and difficulty. Despite that I’ve managed to do a lot of things.

With the love and support of my family, I’ve managed to finish school. In 1999 I graduated with a degree in Industrial Design from “DLSU-College of Saint Benilde”:http://www.dls-csb.edu.ph. This is something I’m extremely proud of.

I’ve worked most of my adult life. I currently work for Vinyl Interactive through Wideout Technology Services Inc., a local outsourcing company. I do front end web development for Vinyl Interactive.
I was the Creative Director for a small start-up called “Sparkplug Studios”:http://www.sparkplug-studios.com. I started this company a few years ago together with my brother and some other friends. Prior to that I spent some time working at other companies, “Burnlounge”:http://www.burnlounge.com and one of iAyala’s start-ups.

Work has always been a big part of my life. Not so much because it gives me monetary rewards but moreso for the sense of dignity it brings. I can honestly look at myself in the mirror and say I’m worth something. I contribute to this world we live.

The past few years have been amazing. I’m still on Myozyme, an enzyme replacement therapy that’s keeping the disease progression at a minimum. I know I should focus on health more but it’s been hard to juggle maintaining my health, working, trying to do some good and simply having a life.

Apart from my full time day job, I also do some writing on the side. I wrote for a local mobile technology magazine called Mobile Philippines, a web site called EveryJoe.com that is owned by b5media inc. as well as some other freelance writing gigs.

One of the most important things I’m doing with my life though is being a part of the “Philippine Society for Orphan Disorders”:http://www.psod.org.ph as a patient advocate. It’s a non-profit organization that aims to help people, especially children in the Philippines who suffer from rare disorders. I also am trying to set up a new project called “The Breathe Initiative”:http://www.breatheinitiative.org . This project aims to help people who don’t have access to breathing equipment such as ventilators, bipaps and cpap machines as well as other respiratory related things.

I love several things in this world with a passion. “Apple Computers”:http://www.apple.com, “Ferrari”:http://www.ferrari.com and “Panerai”:http://www.panerai.com . Among the three it’s only the fruit that I can afford to buy. The other two I’d just have to dream about them. Still life is also about having dreams.

I love my family. I thank God for them each and every day. They are the reason I am here. The reason I’m able to do what I have done thus far. My life is dedicated to them.

I’m an easy going, often times friendly and approachable guy. I’m actually very nice once you get to know me. I get a long with people easily. Chances are we’ll get along just fine.

To know more about me then what’s here, I guess you’ll just have to read the entries here in the web site.

You have a great day now, Ya’ hear!

Church, State and Contraceptives

I believe in God, the Father Almighty. I believe in Jesus Christ his only son our Lord. I believe in the Holy Spirit. I am however losing faith in the Catholic Church.

The recent statements and actions of the CBCP regarding the Reproductive Health Bill and President Aquino’s support for it have me at a loss. It seems that while most of us are struggling to go forward the Church is moving backwards. The Church thinks that we’re still in the medieval times.

We are a nation of close to a hundred million people. It’s true that most of us are Catholics. There are others who aren’t. Why must they be subjected to the whims of a religion that they do not believe in?

The Church seems to have forgotten that there is a separation of Church and State. The Church should not dictate or interfere with the affairs of the government. Especially since not all Filipinos are Catholic. All Filipinos however deserve a government that will put their interests at heart and will provide them all that is required to have better lives. Contraceptives included.

The government must look after all its citizens. It must provide them basic services such as education, shelter and health. The RH Bill provides tools necessary to safe guard the health of women. It also provides them choice. I think that it’s the right of every individual to choose. That’s where the Church should come in.
Instead of meddling in the affairs of government the Church should spend its energy and resources tending to its flock. The Church is the moral compass of its followers. They should ensure that they are educating their members as to what is right and wrong based on their religious beliefs. The members can then decide for themselves if they will avail of the tools being provided by government.

The Church is neglecting its duty of educating its flock and instead it’s just threatening the government and hindering it from doing its job. As such it is also robbing other people of their right to choose. The Church is imposing its belief and values by default to other people.

I honestly think that the Church is imposing its might on the government because it’s easier than going out and educating its followers. It’s easier to rule with an iron fist than to take the time and educate its members. By doing so it’s actually turning off a lot of people. I personally am losing my respect for the leaders of our Church.

The country is facing a problem of a growing population. Everyone knows it except the leaders of the Church. They say it’s not a problem. The children begging for food in the streets beg to differ. We may be an agriculturally rich country but the government lacks resources to fully utilize that and it will take time before we can fully support our population. While we may have natural resources, we’re still a long ways off in being able to fully utilize it. In the mean time people are suffering.

It’s easy for the Church leaders to say we don’t have a population problem. They’re not the ones going hungry. They are well funded and well fed. They have beds to sleep in and food on the table. While they see and work with the poor, poor they are not.
We have a population problem. The government should do something about that. We need to control our growth and make sure that we can support our population. The RH Bill is the right step towards that. Let’s face it, we cannot tell people not to have sex. The Church can’t guarantee that. So we should educate our citizens and give them the tools in order to practice safe and responsible sex.

I appeal to the Church leaders. Stop politicking and start tending to your flock. If the Church educates its members well then even if they were given condoms and contraceptives freely they will still make the right choice based on their beliefs.

If the Church continues on its course of dictating and threatening our government officials, they will lose in the end. They will lose followers because people will respect them less.

I applaud President Aquino for his stand. He understands that he is the President of all Filipinos and not just Filipinos who are Catholic. In the face of threats he is standing by his belief that he should govern for all and not just some.

Life Begins At 30

I’m back!

First of all I’m sorry for not being able to blog for quite some time. Not that it matters really. I have about 2 to 3 regular readers, my mom included.

It’s great that I’m writing on this day. It’s my 30th birthday. As the saying goes, “Life begins at 30″. This birthday holds a very special meaning to me.

When I was growing up and just got diagnosed with Pompe disease the doctors who first saw me said that I’d probably not live past the age of 30. Well through God’s grace and the miracle of modern medicine, I just turned 30 and from the looks of it will live much longer (keeping my fingers crossed).

I consider the coming years to be bonus. Icing on the cake so to speak. I’m happy to be alive and to be enjoying God’s greatness.

I thank my family for my life and for whatever I am now. I thank my friends for making life a bit more interesting. For being there to support me through thick and thin.

My birthday wish is that my family continue to be healthy and happy. May they live long and be blessed abundantly by God. I also ask that God grant me better health so I can do whatever he needs me to do here.

If there’s any kindness left.. God, please give me the resources to buy a car. :P

There’s been a lot that has been going on, I’ll write about them more in the coming days.

PSOD Launch

!/images/18.jpg (PSOD Launch)!

Last Monday saw a realization of a dream. The Philippine Society for Orphan Disorders was launched. A culmination of several doctors, parents and patients desire to form an organization to help support people with orphan disorders.

Orphan disorders are diseases that are very rare. Due to the rarity much help, resources and research are not put into these disorders. Thus “orpahaning them” Pompe is an orphan disorders since it affects only 10,000 people in the world. At least reported cases.

The PSOD was launched at the Makati Shangrila, Quezon B Function room last Monday, June 26, 2006. A simple lunch was served. A program was also presented. The first board and officers of the organization was inducted. My mom is the founding president which makes it all the more special.

Plaques of appreciation were also awarded to people and companies who have helped PSOD and patients even though the organization was not formally in place yet.

Recepients of the awards were Genzyme, Mead Johnson, PGH, to name a few. A plaque was also awarded to my aunt and her new husband for using their wedding as a vehicle to raise funds for PSOD. Instead of gifts they requested guests to give donations to PSOD. Thanks to their kindness the PSOD was able to raise the start-up capital that it needed to get things going.

Genzyme holds a special place in my heart as they are the ones manufacturing and providing Myozyme.

I gave a short speech representing the patients that the PSOD will be helping. It’s a short speech but I think was ok. You can “download a copy of my speech”:http://www.fightpompe.com/file_download/1 here.

Photos of the event can be viewed at “my flickr account”:http://www.flickr.com/photos/71239953@N00/sets/72157594180313174/.

Congratulations To The New Couple

My Tita Stella and her now husband Wayne got married last saturday. This week has been bitter sweet for our family. Bitter due to the death of Lolo. Sweet because Tita Stella got married.

It’s both their second marriage. I hope this time it’s forever. They’ve been together for several years already and this was the logical next step. I’m really happy for them.

In his speech during the wedding reception, Wayne said something like, “people have been telling him, why get married now? he said from where he was standing, why not??!?”. I also asked him prior to the ceremony if he was nervous. He said, no. It was the surest thing he’s done so far. It feels right.

I felt flattered that they asked me to give a thanksgiving prayer during the civil ceremonies. I hope that they liked the prayer that I gave.

All in all the wedding was great. I wish Tita Stella and Wayne all the best. I wish them enough. Enough of everything they need for their lives together. Most especially enough love to last a lifetime.

Goodbye Lolo Part 2

We formally said goodbye to Lolo Dick last tuesday. He was cremated that night. That’s what he wanted.

The night before my mom asked me if I could give a eulogy on behalf of the grandchildren. There wasn’t any doubt in my mind as to what my answer would be. However, given what has transpired in the past few years I jokingly told my mom, “are you asking me or telling me?”. She fired back, “I’m telling you.”. I laughed and told her that I was just kidding and of course I’d do it.

I spend majority of tuesday preparing what I was going to say. I knew I wanted to say something from my childhood. Growing up as the first grandchild I had the most memory of Lolo. I wanted a bit of that. I also wanted to apologize. I wanted to say sorry for what happened between us. You can probably argue that I was his favorite, if not one of his favorites. Until the end, he managed to leave me with something. A valuable lesson in life. Something that I’ve already known but forgot. It’s that our time in this world is limited and we don’t know when we will die. It’s best to say/do things you need to while you can. I learned the hard way that I should have swallowed my pride and made things right between lolo and I. My only consolation is that he left me with this lesson.

A mass was celebrated at 5 in the afternoon, followed by prayers and the Eulogies given by Eliza (Lolo’s caregiver), myself and Tito Boy (Lolo’s youngest brother). A final viewing was held for all the mourners. Ever since I can remember, every time I’d go to a funeral I never looked at the deceased. I don’t know why. Maybe because I wanted to remember them while they were alive. However in Lolo’s case I broke that “tradition”. I wanted to look at him for a final goodbye. So at the final viewing I asked to be carried so I can see him. The casket was elevated so I really needed to be lifted.

Lolo was finally cremated at around 8 that evening. My mom, her brothers and sister and some other close relatives and friends witnessed the cremation. I didn’t go. I didn’t want to look. So I took my small cousins back to our house and waited for our parents there. I took the time to bond with them. I never really got close to my cousins because of our age gap. I needed to change that. In a way maybe Lolo’s death will bring us closer together.

Goodbye Lolo Dick

Goodbye’s are really hard. Especially if it’s for good. My Lolo (Grandfather) Dick passed away a few hours ago due to complications arising from his diabetes. He had kidney failure already and had been undergoing dialisys the past few years.

Lolo Dick was my mom’s dad. I have found memories of him as a kid. Being the eldest grandchild, I was one of his favorites. Maybe because I was the first one and thus spent a lot of undivided time with him. My brother who’s the second grandchild came four years after me.

He lived a full life. Accomplished a lot of things. I’m sad to see him go. Especially since the last few years haven’t been that good. I am happy though that at least he’s now at peace with our Lord. His suffering is through. His pain is gone.

Lolo, I know we’ve had misunderstandings. Our relationship hasn’t been perfect. My only regret is that I didn’t get to tell you I love you while you were still conscious. I know the past years haven’t been the best. I do love you.

I hope and pray you’re happy there in heaven. I’m sure Lola (Grandmother) is there waiting for you. I’m sure you both will be happy now that you’re together. I miss lola. Give her a kiss for me.

You’re in good hands now Lolo. You’re with God. He’ll take care of you. I’ll see you again one day but hopefully not for many years. I still have a lot to do here.

Thanks for everything. Thanks for giving me my mom. She’s a good mom. I’m sure you know that. She took good care of you. If there’s one thing you did right it was that you raised a good daughter.

Goodbye Lolo. Take care and God bless.

An Evening At San Miguel

With a simple thank you and God bless, I ended my talk at the Corporate Library of San Miguel last evening. A warm round of applause followed the end of my simple sharing. Around 20 of San Miguel’s employees took time off their busy schedules to attend the April learning session.

I was invited last March by Bong from the Organizational Development arm of San Miguel, to give a talk at one of their monthly learning sessions. This is part of their Values Program to further instill the corporate values of their company.

Every time I’m given a chance to speak in front of an audience I make it a point to try my best to do so. It’s something that I’ve been doing as a way of giving back. I want to share the unique experience I’ve gained, insights I’ve been blessed to have as a result of living with Pompe. Truth be told I’ve learned a lot because of Pompe.

Some might say that having Pompe is a negative experience, I look at it as something positive. As much as living with Pompe is a constant struggle, I’ve learned so much from it. Of course life would be easier if I didn’t have it but I might also not be the person I am today if I didn’t go through it. I like who I am today.

The setting at the learning session was an intimate one. A few chairs and couches were prepared. The atmosphere was cozy. I shared with them several stories which were tied to specific lessons I’ve learned and lived by all these years.

From lessons on ThisAbility (turning a negative into positive), success as a process, being the best you can be, trying as the first step to success and faith, I’ve tried to impart to the audience how all these things have helped me get to where I am today.

From a distance where I am right now might not be much but looking closely and examining the road I took to get to where I am, you then realize that to a certain extent I am successful.

My teacher in highschool once wrote on top of our blackboard “Success is not where you are but how you get there”, it’s been one of the most valuable lessons I’ve learned in my life. This has also been echoed by renowned leadership guru John Maxwell in one of his books where he stated “Success is a process”.

To the people at San Miguel who watched and took time out to hear me speak, my deepest thanks. It’s been a great experience for me as well.