It’s A Wonderful Life

I’ve heard about the movie “It’s A Wonderful Life”. It’s usually shown in the United States during Christmas time. It stars James Stewart as George Bailey and Donna Reed as Mary Hatch Bailey.

In a nutshell the story is about a guy who on Christmas Eve was thinking about committing suicide due to the problems that he is facing. Added to that he has felt trapped in his life, wanting to get out of the small town where he lives in but couldn’t because of his responsibilities to his family and the community. George, the main character has longed to go and see the world but due to circumstances throughout his life has been forced to stay and take up responsibilities that he felt no one could shoulder but him. He’s seen his peers go off and make something of themselves, travel, go to college, etc.

Through the course of the movie the viewer is taken back through George’s life, from childhood to adulthood, from one responsibility to another. George is a remarkable fellow, he just isn’t aware that he is. People in his community look up to him and respect him a great deal.

When he is confronted with a problem that seemed insurmountable, he contemplated committing suicide because he thought his life was worth more dead than alive. God sent down a guardian angel to help George. Clarence, the angel showed George a glimpse of what his community would have been if he hadn’t been born. George saw that he had touched the community more than he imagined.

I won’t give much of the ending away so as not to spoil it if you haven’t seen it. Suffice to say that the movie is a classic for good reason. It’s a heartwarming story that would surely tug at anyone’s heart.

I loved the movie for the simple reason that it teaches us that our lives are important. We matter to other people. Though it may seem that our lives aren’t exciting or that we don’t matter, the simple honest truth is that our lives matter. In one-way or another we touch other people in a way that changes them as well.

Friendship is also a prevailing theme of the movie. I loved the quote inside the Tom Sawyer book given to George. Part of the inscription says, “Remember no man is a failure who has friends”, a few simple words that ring so true. No matter how far we get in life, we have nothing if we don’t have friends and family. The same as even if we are poor, as long as we have friends we are rich.

I absolutely loved the movie because I could relate to it. In a way I feel the same way George felt. I see life all around me go in different directions. My family and friends are going through a lot of changes. From graduating, getting married, traveling the world, working interesting jobs, etc. I feel that my life has not progressed as much. There are a lot of things that I’ve wanted to do but due to circumstances I cannot pursue. It’s hard at times to see how everyone’s life is going according to plan and seeing your life not go according to how you want it.

Yet, I realize that in some ways my life is different for the better. There have been instances that I’ve been able to touch other people’s lives and made a difference in theirs. I’ve met good friends that I probably wouldn’t have if I were in a different situation. It’s a blessing.

Life sometimes does not go the way we want it to. There will be circumstances that will alter how it turns out. We all can’t live the life that we want to but we can all try and live the best lives we can. There are some people who will be lucky enough that they’ll be able to live their dreams. Those are far and few in between. Most people will live a semblance of their dream lives or pursue other dreams. That’s great too.

I’ve learned that while my life did not go how I wanted to be, there are still a lot of blessings that I’ve had. One of the greatest blessings is the chance to make a difference to people’s lives in my own small way. Through my experience with Pompe disease, I’ve learned so much that these lessons can be used to help other people.

Christmas day is almost over, but before it ends please allow me to wish you all a very Merry Christmas and to wish that each and every one of you realize that no matter how things are in your life, the mere fact that you are alive makes you realize despite all of life’s challenges all of us have wonderful lives!

* You can buy the movie on “iTunes”: or “Amazon”:
* You can

2010 Is The Best Year Of My Life

I was fortunate enough to receive Tony Meloto’s end of the year letter entitled “2010 Is The Best Year Of My Life”. It’s a very nice read with lots of great insights from a truly remarkable man.

One of the biggest blessings I’ve had in my life is the privilege to know Tony Meloto and his equally wonderful family. They have blessed our lives simply by just giving us their gift of friendship. Theirs is a story that while is still being told, deserves to be immortalized.

Please allow me to share Tony Meloto’s letter. I hope that you enjoy reading it as much as I did.


2010 Is The Best Year Of My Life
by Tony Meloto

This is my first Christmas as a senior citizen.

Despite back aches, psoriasis sores and joint pains due to the cold weather and lack of sleep, at 60 I do not consider myself old.

Old age is only for those who cannot think young… or dream of tomorrow… or live for a purpose today.

I welcomed in January this new chapter of my life with kape, pandesal and suman with a throng of well-wishers in the streets of Bagong Silang where my Gawad Kalinga journey began.

With me starting his grass-roots campaign was the reluctant candidate destined to be President in six months.

That moment was totally invigorating for me — the scent of hope in the air and the chance for change and new beginnings.

Hope is energy. It is my fountain of youth.

Since then many things have happened to me during the year — learning more life lessons to keep my mind wiser and younger.

In March, together with that reluctant candidate, Reader’s Digest said we were the most trusted men in the country.

I can travel anywhere to help others because my wife knows that after 32 years of marriage she is the only woman who can share my bed.

I gain freedom when I gain trust. I gain trust when I do not covet my neighbor’s goods or my neighbor’s wife.

In June, it miraculously happened. Yellow became the color of hope again. Since 2003 when Tita Cory launched GK, yellow for us is people power over poverty, as pink is to cancer and red is to HIV.

Now with the son, hopefully yellow is the color of solidarity, of rich and poor working together to banish social inequity in our country.

The reluctant candidate became our bold head of state, the first bachelor President with no First Lady to pamper and no children to spoil with power. With no political debts, armed with the courage and eloquence of his father and the integrity of his mother, President Noy Aquino vowed to care for the poor and give hell to the corrupt.

Just the possibility of purging corruption from our system is mind-blowing to a nation resigned to it.

Smart politicians in our country are common but an honest leader is rare. I am confident however that more will emerge if the man at the top will show everyone that there is at least one.

I am not naïve to think that we can change overnight, no matter how honest or intelligent our leader is. Our problem is immense, he will make mistakes, his friends can betray his trust and he will be attacked by his enemies even if he does what is right. But if he remains steadfast in six years, great things will happen.
My trust has been betrayed by some whom I thought were true friends and I am not even a politician. But I hold my peace and try to do more good when bad things are done to me and to my country. Now I do not have to defend myself because the good that we do already keep defending us.

A sincere and honest man can sleep soundly like a baby even in the face of difficulty and wake up to find solutions the next day.

Freedom, hope and peace are God’s gift to me for 2010.

I thank God for the gift of country, for the profound affirmation that it is my privilege to be Filipino, that the Philippines is the best place for my family to be at this time when Asia is finally coming of age.

I thank God for the gift of family. My wife and I have six beautiful grandchildren who will grow up with honor in our land of great promise where no children have to be raised in slums or beg in the streets.

I thank God for our patriots and friends in Gawad Kalinga who will never abandon the poor. They are transforming more communities and breeding more heroes, here and abroad. We have a young leader in GK of great character, competence and compassion who is our bridge of hope to a brighter future by 2024. Luis Oquiñena is our guaranty that more dreams of the poor will be a reality.

I thank God for the saints of the poor and the guardian angels of those helping them– Joey Velasco, Nonoy Maloloy-on, Hecky Villanueva and Nong Feliciano — who have shown by their exemplary lives on earth that to love country is holy, that caring for the poor is true spirituality.

The year has been tiring but immensely exciting for me, spreading our good news in North America, Europe and Asia.

The GK Global Summit in Singapore in June helped us discover our kinship with other Asians and the need to nurture our bond to gain collective strength so none of us in the region will remain poor.

What was striking about Europe was that they saw poverty not as a matter of charity but a serious issue of morality. To them the failure to practice social justice is simply wrong — tolerating poverty is not acceptable. I shared with three universities in France and volunteers in Austria that social justice is the first step to progress in our GK villages. More like-hearted Europeans are coming next year to express solidarity.

In the United States, hospitality was undiminished despite the bad state of their economy. With recession in their country of choice and optimism in the homeland they left behind, Filipino Americans I visited were restless — their grass was not so green in America anymore — yet also hopeful, with many of them coming home to build their Filipino Dream now that there is a concrete channel that they can trust in GK and the resources to do it. As America has been a good home to 4 million Filipinos, we want 350 million Americans to discover that the Philippines is a good home to them in Asia.

The Canadians see Asia as family, friend, partner, resource and market and the Philippines as a main gateway to it because we speak English, we have nearly a 100 million consumer base and we are a source of educated and skilled immigrants to their country. Helping our country is a wise investment in goodwill, not charity.

They can sense that this is our moment.

Asia is the new powerhouse of the world. There are tremendous opportunities for growth in underdeveloped areas like the Philippines while many rich economies are in the doldrums. We can continue to lament our fate or decide to catch up and even surpass our less endowed neighbors. After hitting rock bottom, there is no place for us to go but up if we decide not to stay down. The key is to discover that love of country is the way to prosperity like the case of Singapore, Korea and Japan.

To grow our economy, we need to make a radical innovation in human resource development by looking at the poor as family.

That will motivate us to invest our time, talent and treasure in making them un-poor. It is natural for us never to give up on home and family because they define who we are.

Being a father to the poor keeps me young. Investing in raising them to be productive citizens is gratifying and makes good business sense.

In October, we received another global affirmation that GK is an effective Asian model of wealth creation with a big social impact. The Ernst&Young Social Entrepreneur of the Year award given to us meant that our model is viable, our cause is noble and our supporters are credible.

It pays to invest more money to do more good.

The big money is now on social business — green bucks for green technology — profit for more community benefit — turning trash to cash. Excellent Filipino brands can be produced cheaper locally, give better wages to poor workers, pay higher prices to poor farmers, get more carbon credits, raise more social entrepreneurs, be more competitive globally and create more wealth for our country. The key is less greed, more for others in need.

Our journey from shame to fame can be profitable for everyone.

The key is to think big for our small brother.

The big boys go for the big vision and the big idea that have proof of concept. The GK villages are concrete proof of the power of solidarity — of rich and poor, of capitalist and consumer working together to raise human dignity, promote productivity, expand the market base and create wealth for many.

The year 2010 is almost over, the air is getting colder, my tired body is slightly older, yet the spirit does not waiver as the vision is becoming clearer, the work is getting bigger and travel for me is more hectic than ever.

Time is precious for the traveler with much ground to cover before the journey is over, not failing to smell the flowers or smile to strangers along the way.

While many people my age think of slowing down for a much deserved rest, I think of accelerating my pace to catch the outpouring of opportunity and grace.

The dark clouds are parting, better times are up ahead and there’s no time to waste.

This was the overwhelming message in my recent backbreaking 18-city one month tour of hope in Europe (October 13 to 20) and Canada and the US (October 23 to November 15). Everywhere I went it was the same sentiment: our people want to come back and pay back, to build and to produce, to plant and to harvest, to rise with the dawn and set with the sun in the land we call home.

All the effort was worth it — my separation from loved ones, the almost daily packing and unpacking, the endless waiting in airports, half-sleeping up in the air, awakening passion in small and big sessions in town hall settings and formal dinners despite my own need for sleep — just to catch this precious moment of longing to help the country of our deepest affection.

Now I’m in Taiwan upon the invitation of the Jesuit Business School of Fu Jen University to talk about our brand of social innovation. It amuses me that my audience gets younger as I get older, that I can challenge young minds not to accept stale ideas that do not make life better for the planet that they will inherit. I am also energized by people my age who can remain young and fresh in outlook, who always look forward to a bright new day in the darkest of nights, to spring in the coldest of winter.

The onset of old age to many is like the first snow of winter — white hair for those who are lucky enough like me not to lose them and the dread of cold lonely nights in nursing homes or in big empty nests as grown children get too busy to visit or to call.

I look at mine differently.

I will never run out of nests if I continue to build for the homeless nor will they ever be empty if I never stop being a father to the strays. The buds will always sprout if I continue to plant and turn our barren countryside into fields of abundance to feed the hungry. Our country is poor not because we are less endowed but because we have squandered our endowment. We are poor because we do not wish wealth for all.

Taiwan for me is beautiful because I saw no extreme indulgence and no deep deprivation. Life is busy but there is a sense of serenity and simplicity, of fairness and justice where there is enough for everyone. I walked the clean safe streets of Taipei with two Ateneans in their twenties talking about how good life is when no one is left behind.

Tomorrow I fly to South Korea to keynote the opening of the Asian Social Entrepreneurship Summit 2010 (ASES). It will be an interesting gathering of dreamers, social venture capitalists and bankers who are finally starting to see more clearly how money can be the root of great good.

More interesting for me is the fact that our rich Asian neighbors want to hear the Gawad Kalinga story how the poor can create wealth to help our country join their ranks.

I’m just glad though that there is so much good to do and more people now want to do it. I guess growing old for me can wait.

2010 is the best year of my life. I know that we can make next year even better.


The “Philippine Pediatric Society”: invited me to speak during their 47th Annual Convention. It was the last day of the convention and they asked me to talk about hope. Being in my situation, I’ve had the unique perspective of going through a lot of tough times. The thing that got me through it all and still does is hope. Well apart from my faith in God.

They showed a short video of me that was made several years back and after wards I was introduced on stage to give a short speech/talk. Below is the text of my speech. I wanted to share it with you guys.

47th Annual PPS convention

——- start text of speech ———

Good morning ladies and gentlemen. I am honored to be here in front of you. Pediatricians hold a very special place in my heart. So much so that I was once asked “If I could choose the profession of my future wife, what would it be?” My answer was “a doctor, pediatrician to be specific”. I just feel that pediatricians are special breed of doctors. It’s not enough that you’re a good doctor, a pediatrician needs to be much more patient and compassionate because their patients are children. In fact right now, the doctor that administers my enzyme replacement therapy is a pediatrician. Well, it’s probably because I still act like a child sometimes.

Today I’d like to start of my brief talk or sharing if you will with a quote about hope. It goes…

The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they both lead to the same destination. ~Marion Zimmer Bradley

The author is an American novelist. This quote leads me to a conversation I had the other day with a father of a child with C.H.A.R.G.E syndrome. He narrated to me that when his child was born, barely a month old, he had a friend who also happened to be a doctor, tell him to give up on their child. It would be such a waste of economic resources as well as a huge burden to their family. There’s little chance that the child will have any sort of meaningful life ahead. The father refused to do that. With hope in his heart and with strength of conviction, he and the family pushed on. Today, his daughter is doing well. A lot of her problems have had remedies and she’s improving slowly but surely.

Now even if the outcome was different and the child did not improve or worse died, it would have been easier to go through that journey with hope in your heart than despair weighing you down. This is not to say that we all should have blind faith and believe that everything will be ok. But we should always keep hope in our heart.
My life is a story filled with hope. As you’ve seen in the video that was just played, I am receiving Enzyme Replacement Therapy, something that was not possible just a decade or more ago. Yet here I am right now, benefiting from it.

When I was young and first diagnosed with Pompe disease, we were told that I might not live past the age of 30. There was very little work being done about Pompe and that I may not see a treatment or cure in my lifetime. Well, I’m 32 now and I think it’s safe to assume that I’m still alive.

My parents never lost hope. That’s also what they instilled in me. While at that time we didn’t know how things would turn out, my parents always taught me to believe. Do what you can now, try your best but keep hope in your heart that just around the corner something good is coming.

One of the first doctors that took care of me, said while we don’t know whether or not we’ll see a treatment or cure in your lifetime, we should prepare for that in case it happens. He asked me to focus on my diet, keeping healthy and staying strong.

True enough, a few years shy of my 30th birthday I received my first infusion of Myozyme. The first Enzyme Replacment Therapy for Pompe disease. This has improved my life considerably allowing me to surpass the age that I was told I would not exceed.

Hope is what got me through those years. I’ll be honest there were times that I was about to give in to despair but somehow, hope found a way. Hope is motivation. Hope allows us to win our small battles everyday.

I am here today as an example of what hope together with the compassion, determination and support from doctors like you can become. I’m using my life in order to represent patients with rare disorders. To convey a message to the world that we deserve a right to life as well, that we shouldn’t be written off just because our situation is not as ideal as one would like.

Modern science has improved leaps and bounds. We now have access to technologies that were once but dreams. The chances for improving lives of patients are better than ever. However sometimes these medicines or treatment will take time, hope is what will get people through in between.

When families first realize that their child is sick, the first thing they do is bring the child to a doctor. You are their lifeline. They look to you for guidance. They look to you for hope. While I understand that there will be situations wherein there will be little that can be done, hope should always remain. For we can’t know for certain what the future will bring. I guess what I’m trying to say is that it’s just not about treating the physical symptoms it’s also about nurturing the soul.

Christopher Reeves more popularly known as superman, one of the people that I admired in this world said, “Once you choose hope, anything’s possible”. Anything is truly possible with hope. The strength of the human spirit knows no bounds.

As I continue to live my life with this disease, uncertain of what the future brings, I have hope in my heart that as long as I continue to do the best that I can, things will be fine. In the case that things don’t life is still certainly infinitely better with hope in my heart than despair weighing me down. Also when a person is hopeful it radiates and makes others around him hopeful as well.

In life all that we can really ask of ourselves and of others is to do the best that we can with what we have and leave the rest to God. Whatever will happen will happen.

As I close this talk of mine, I would like to extend my sincerest gratitude to the doctors that I’ve had the pleasure of working with all these years. Dra. Sylvia Estrada for the wonderful care that she and her team has given me. Dra Padilla, Dra. Silao and Dra. Dela Paz for their tireless efforts in helping the Philippine Society for Orphan Disorders as well as looking after patients with rare diseases. The wonderful team at the NIH who do so much for patients like me.

I’d also like to thank the efforts of the people who work for companies like Genzyme who despite the small numbers of patients with rare disorders make a huge effort in coming up with treatments to keep us alive.

The compassion and understanding of these people as well as tireless efforts in ensuring that patients like me have a future will forever be remembered. My life is possible through them.

I would like to leave you with these words from an unknown author. When the world says, “Give up,” Hope whispers, “Try it one more time.”

Oh, if there are any young single pediatricians out there… my number is….

Thank you very much and have a great day ahead of you

Juan Magdaraog
Patient Advocate – Philippine Society for Orphan Disorders

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.

This Is What You Get With Perseverance and Some Myozyme

I was reading through my GSDnet emails when I came across an email from David Hamlin. In his email David is sharing the progress of his son Eric with Myozyme and a whole lot of exercise. He posted some videos on the “United Pompe Foundation”: web site. I checked it out and what I saw had me nearly in tears.

Awesome. That’s the word I’d use to describe David, Eric and the rest of the Hamlin family. It was through their collective effort and of course the people at Genzyme who brought us Myozyme that Eric is doing as well as he is right now.

Eric hasn’t been able to walk since 2001. He started with Enzyme Replacment Therapy April 2004. 11 months after progress was more evident. Now, Eric is taking his first steps with a walker. That rocks!!!

Pompe has slowly ravaged the bodies of people unlucky enough to get afflicted with it. Myozyme works but it does take time. This is evident with Eric’s case. It took awhile before significant progress was made. It took years to destroy the muscles, it will take years as well to repair it.

I guess the key to all of this is managing expectations. I understand that Myozyme is not a miracle drug. I understand that each patient will differ in the progress he/she makes. I also understand that it will take patience, hardwork and determination. I should learn a thing or two from Eric.

Go watch the videos “here”:

Little Miracles

Life is filled with “Little Miracles”. Things that happen unexpectedly but amaze you. They aren’t big or earth shattering. When you tell other people about them, it may not seem like a big deal to others but for you they are. Well, one such thing happened to me today.

Since I started my Myozyme infusions, I’ve tried to manage my expectations. I know Myozyme has done good for some patients but it’s still more or less a case to case basis. It affects people differently. Some good, some less than ideal. So I’ve already told myself not to expect much. I’m not going to suddenly get up from my wheelchair and start dancing. No, nothing like that. In fact I’ve already accepted the fact that I may never walk again. My hope was to merely get off my breathing machine, even if it’s only during the day time. Lessen my dependence on my Bi-Pap machine. That would be fantastic.

I took my first steps towards that goal today. I consider today an exceptional day. I was feeling good and strong. I woke up without having a lot of coughing. My lungs seemed clear. I wasn’t feeling sluggish. I went about my morning routine. Stretching, assisted biking exercises and then onto my morning meal. I had oatmeal today with half a mango. I had some coffee with milk. Regular stuff.

I usually go to the bathroom afterwards to do my business prior to taking a shower. Now whenever I go to the bathroom, I don’t have my Bi-Pap machine with me but my aide and I developed a technique already to assist my breathing. Basically, he makes a fist and pushes it against my stomach in a pumping motion. This helps pump air in and out of my lungs.

After doing my business, I was transfered to the shower. I told my aide to stop pushing first. I wanted to try and see if I could breathe on my own. I tried it and felt good doing so. Seconds turned to a minute and a minute eventually turned to eight minutes. I was breathing by myself. Although not like a normal person. I couldn’t talk much, I was concentrating hard on my breathing. Towards the end I was desperately gulping in air. I managed to complete my shower though. I was transfered to my room without being assisted with my breathing. By the time I got to my bed and the Bi-Pap was placed on my nose, I was gasping and really thankful I’m breathing with assitance again.

I felt a deep sense of joy. I did it. 8 minutes on my own. Something I have been unable to do so in years. One thought kept me going while trying this exercise. That was the though of telling my parents that I was able to do this. I wanted to give them some good news. Something to show them that the past year and two months weren’t for naught. I’m showing some signs of improvement. The biggest of which is simply the fact that my condition has not gotten significantly worse. It’s remained the same if not slightly better. This is proof enough.

I called up my mom and dad to share the news with them. Both of them were happy.

I was able to repeat it that afternoon. But it was a little easier when I did it this time since I was on my wheelchair and I had a pillow on my lap I could push my stomach against. I breathed on my own for 15 mins, while getting my hair cut. I was exhausted after.

Little miracles. Nothing big for other people but certainly a miracle for me. It was definitely a good day.

Team Hoyt


I was browsing through “”: today. I was going through the videos section when I chanced upon a link to a google video titled “Can”. The title of the story on “”: read “Strongest Dad in the World!!! Absolutely amazing! Must See!!”. Something inside me made my finger click on the link.

Amazing! That’s all I can say about the video and the story of “Team Hoyt”:

There are stories that inspire you. Stories that truly touch something deep in your heart. Stories that make you think and say to yourself that the human spirit is such a wonderful thing. It’s capable of climbing insurmountable obstacles. Rick and Dick Hoyt’s story is one of those.

Rick was born with a severe disability. He has cerebral palsy and is a spastic quadriplegic. He also can’t talk. He uses a special computer to communicate with people.

Dick is a loving father commited to making sure that his son Rick, lives the best life he can. When doctors told Dick and his wife to place Rick in an institution because he wouldn’t be able to do anything when he grew up, they said no. They brought Rick home and raised him like any normal child. The same way they did for their two other sons.

In 1977 Rick told his father that he wanted to participate in a 5 mile benefit race for an injured lacrosse player who was paralyzed in an accident. Dick who was hardly a long distance runner agreed to push Rick in the race. They finished second to last but that didn’t matter. Later that evening Rick would tell his dad something that would change their lives forever. Rick said “he just didn’t feel handicapped when we were competing.”.

For more than 25 years now, father and son have been competing in various marathons, triathlons and other gruelling races to spread their message across, “Yes You Can”.

This story struck me because in some way I can relate to it. Like Rick I also managed to finish school despite the odds. I’ve gone on to lead a productive life. While I’m far from being the athlete that they are nor am I the ambassador for people with disabilities such as they are, I’m inspired to do what I can. Maybe one day I can do as much as they can. I promise to give it a go.

Like Dick, I also have a loving and caring father. That goes the same for the rest of my family. While my dad didn’t carry me, push me or pull me in gruelling races, he did push, pull and carry me through life. His sacrifices, hard work, perseverance and never-give-up attitude made me who I am today. For that I am eternally grateful.

This blog entry is dedicated to Team Hoyt and all the families out there who continue to battle through life dealing with disabilities. Their strength and perseverance give me hope and inspiration to carry on. Their stories fuel my motivation to turn my life hopefully into a story like theirs.

Watch the video “Can” either on “Google Video”: or “You Tube”: or read about them in this “CNN Article”:

Visit the “Team Hoyt Website”: as well and read about their fantastic story.

A Soldier’s Prayer

I got this from “Bernadette’s Blog”: it’s a written by an anonymous soldier during the first World War.

Here is goes..

I asked God for strength, that i might achieve,
I was made weak, that I might learn to humbly obey.

I asked for health, that I might do greater things,
I was given infirmity, that I might do better better things…

I asked for riches, that I might be happy,
I was given poverty, that I might be wise…

I asked for power, that I might have the praise of men,
I was given weakness, taht I might feel the need for God…

I asked for all things, that I might enjoy life,
I was given life, that I might enjoy all things…

I got nothing that I hoped for– but everything that I had hoped for,
Almost despite myfelt, my unspoken prayers were answered.

I am, among all men, most richly blessed!

I loved the prayer simply because it echoes most of my thoughts about my life. It rings true. God made me weak so that I may learn to be humble. I was given Pompe’s disease that I may go on to achieve things that I would not have if I was normal. I was given weakness so that I may learn to turn to God and know he’s beside me. I got nothing that I hoped for and yet everything that I needed and more. I’m truly blessed.

That’s not just lip service. I truly feel that my life is blessed. So far I’ve been lucky. A loving family, friends, education, some comfort in life. God has truly blessed me.

Now this Soldier’s Prayer will now also be a Fighter’s Prayer.

Happy Easter!

I want to wish everyone a Happy Easter. This is a day of renewal. The day that Jesus Christ rose from the dead to fulfill a promise. To complete our redemption from sins. He died for us and now he rises for us.

This Easter is a special one for me. I got to spend time with my family, almost all of them including my aunt and uncle from California. What really makes it special is because this is my first Easter on Myozyme.

The treatment has given me a renewed sense of hope. A rebirth of sorts. As much I was hopeful before I am moreso now. It’s with great happiness that I now look forward to the days ahead. With Myozyme I am now more optimistic that my quality of life will improve. I hope it does so.

A friend sent me this message via SMS. I’d like to share it with you because it’s a great one.

bq. Today is God’s way of saying, “one more time..!” live life, make a difference, touch one heart, encourage one mind and inspire one soul. A blessed, happy & meaningful EASTER to you n your family! Ü

Fight Pompe Around the World

I’m starting a new thing here at Fight Pompe. Since launching the “Fight Pompe Store”: several months ago, I’ve sold several shirts already. Many thanks to all those who bought shirts. I sincerely appreciate it.

In order to create more awareness and just to see where Fight Pompe shirts have been I’m making a call to those who’ve bought them to send me pics of you or someone wearing the shirts with the general location of where the pic was taken. With your permission I’d like to post them here just so people can see where the Fight Pompe campaign has been.

As a firm believer in leading by example I’ll go first. Below is a picture of me wearing a Fight Pompe T-shirt inside the hospital room during my 9th infusion. Pardon the picture, I forgot the digital camera at home and had to make do with the built-in camera of my mobile phone.

Man! I gotta put on some weight!!!! I look so thin in the picture… But trust me, I look better now than I was a few months ago. Still, I got a long way to go…

So c’mon send me yours. You can email it at juanbkm at gmail dot com.