I’ve always believed that children should always be happy and carefree. In a perfect world no child should be sick. However, we don’t live in a perfect world and it’s sad to see sick children. especially if the condition is so rare and life threatening.
Hannah is a 4 year old girl who suffers from a condition called Congenital Central Hypoventilation Syndrome or CCHS. This excerpt from the CCHS Network explains it best.
CCHS is a multisystem disorder of the central nervous system where, most dramatically, the automatic control of breathing is absent or impaired. A CCHS patient’s respiratory response to low blood oxygen saturation (hypoxia) or to CO2 retention (hypercapnia) is sluggish during awake hours and absent to varying degrees during sleep, serious illness, and/or stress.
Hannah is the daughter of Carlo and Joan Cordoviz. I met Carlo almost 2 years ago through Facebook. He looked me up because I belong to a non-profit organization called the Philippine Society for Orphan Disorders, our non-profit aims to help people, especially children with rare diseases.
Carlo and I hit it off and we became friends. We had a common bond. A rare disease has touched both our lives. He had a daughter with a rare disease and I was suffering from one. We could understand what each one was going through.
As time went by our friendship became stronger and I got to know more about Hannah. Carlo would update me about her condition and I would also look at her pictures on Facebook.
About a week ago, I found out that Hannah was celebrating her 4th birthday. I asked Carlo’s wife Joan what their plans were. She said that they didn’t have any plans. Due to the enormous strain that Hannah’s condition puts on their finances they didn’t even have any extra left for a small birthday party or even a special gift for Hannah.
I felt really bad when I found out. I felt bad for several reasons. One like I said, children should always be happy. I don’t like it when I see children sad. Two, people like Carlo and Joan who work hard, love their child and try to be the best parents they can be don’t deserve this much hardship. I believe that people who work hard should be rewarded and deserve to have blessings thrown their way.
What I felt was not a sense of pity. I just felt that it was an injustice that good people can’t be happy on a special day in their lives.
It was barely six days away and it was not a lot of time. I didn’t have a lot of resources on my hands but I said to myself, I wasn’t going to let Hannah’s birthday pass by without doing something for her, for their family. It was unacceptable to do so. I also found out from Joan that Hannah liked learning stuff. She also was fond of her speech therapist’s iPod Touch.
I said to myself, Hannah deserves an iPad or at the very least an iPod Touch. I’m an Apple person. I love their technologies and from experience I know that the iPad and iPod Touch are both great learning tools that can be loaded with apps to help a 4 year old child who can’t speak because of her trache, communicate and also learn more with this tool.
It’s settled! Hannah will get an iPad or iPod Touch for her birthday. Oh wait! Damn! I have some expenses I needed to pay off. But I didn’t want that to curtail her gift.
In the middle of the night while browsing through FaceBook, I chanced upon my friend Charles who also happens to be my Apple supplier and is the owner of one of the country’s premier Authorized Apple stores. I asked Charles if he had any iPad’s in stock. He said he wasn’t sure as they really were hard to come by. The only model that would fit in my budget was a 16GB one.
Charles asked me why I needed an iPad. I told her about Hannah and her family’s story. He was so touched and moved by it that he thought for a minute and said. Look, I think I have a display unit of the iPad 1 left. They changed displays at the store because of the new models and they usually sell those display units off.
He told me that it was display unit but it was in very very good condition. Instead of selling it, Charles said, “it’s yours! Give it to Hannah.” I’ll even throw in a free case and screen protector. Have it picked up at the store.
I protested and told Charles that I would be happy to pay. He would have none of it. He simply said that he has been blessed so much and this is just a very small way of giving back. Ok, then. I can’t argue with that. I’ll take it!
Birthday gift, check! But wait! We can’t have a birthday without cake! The next day I promptly put in a call to my cousin Peachy who happens to be one of the country’s top cake designers. I asked her, how much is a birthday cake? She asked me why I needed a birthday cake. My birthday wasn’t for months. I told her about Hannah. She said, “Ok, ok, you got me already. Hannah will get a cake on me.” Not much convincing needed there!
So now we have an iPad and a birthday cake. What else do we need? Oh shoot! I forgot. The iPad is only as strong or useful as the apps on it. Hannah needs some iTunes GCs to load stuff on her iPad.
This time, Twitter comes to the rescue. I sent out a tweet asking where I can get some iTunes GCs. Two friends reply. One of them only wants to be identified as “Tito Pogi”. He asked me why I needed it, I narrate Hannah’s story once again, he says I have an extra iTunes Gift Card here. It’s Hannah’s! I’ll it to you.
Another friend sends me a message. Ms. Chuvaness herself tells me I could get some from DataBlitz in Shangrila. But when she finds out why I needed to buy it, she said, I have an iTunes Gift Card here. Please give it to Hannah.
Hooray! I know have an iPad, iTunes GCs and a cake to bring to Hannah! I was so excited for it to be Sunday.
While I was putting this all together, I was also speaking to a friend who also knows and in fact very close to Carlo and Joan. Pam is also a mother to a special needs child with a rare disease. Pam and Joan had become close friends as well. I told Pam that we should go and visit the Cordoviz family and spend Hannah’s birthday with them. She agreed immediately and made arrangements on her end.
Having a special needs child is never easy. So I know it’s also a sacrifice for Pam to go to the Cordoviz’s house, especially on a Sunday. She made the sacrfice and even brought her daughter Julia, who suffers from Retts Syndrome and Janna, Julia’s younger sister.
Sunday came and I made the trip to Las Piñas. Before going to Hannah’s house though, I went to Shortcrust, Peachy’s shop to pick up a cake. It was such a beautiful cake with fondant frosting and sugar lollipops on top. There was also fondant lettering that spelled out Hannah’s name. It was a marvelous cake from one of Manila’s premier cake designers. It wasn’t just any ordinary cake.
I also passed by KFC to pick up food to bring. KFC is one of my comfort food and it’s not a party without KFC.
I arrived slight past 4 pm in the afternoon. Pam was already there. She brought some gifts and food too. Julia was watching TV and Janna was already upstairs playing with Hannah.
Carlo met us at the driveway. It’s been a long time since I’ve seen Carlo and his face showed the signs of weariness from a combination of working nights and still being up in the mornings to help care for his daughter. Despite that he had a smile on his face, happy to see a friend who he has not seen for a long time.
I could sense that seeing friends was definitely a treat for them. They don’t often get a chance to go out and socialize with people because of the round the clock care that Hannah needs. So every chance to see friends is a welcome one.
It was also the first time that I would be meeting Hannah and Joan in person. The time’s I’ve seen Carlo, it was always he who would drop by our house. Up till then, I have not had the chance to make a trip to their house. Mainly because it’s not really easy for me to travel plus a lot of things got in the way.
I was so excited to meet Joan and Hannah! When I got inside the house, Carlo told me that Hannah was still upstairs. She mostly stays in her room, where it’s clean and sterile. They try to keep Hannah away from germs because any little infection can lead to something serious for Hannah.
Hannah came down after awhile. I was so happy to finally meet her in person and even if she could not utter a word, she had her own sign language to communicate with people.
We presented Hannah with the gifts and birthday cake. Although she could not blow her birthday candle, it did not take away from the joy that she felt.
Hannah’s dada and mama, helped her open her gifts. The whole family was shocked when they opened the package and saw that it was an iPad! Extremely grateful for the blessing that came their way.
Carlo would narrate later on that he really wanted to give Hannah a used iPod Touch since he could not afford a new one. However Hannah’s birthday came and he still did not have the money to get one. So it was definitely a blessing to get an iPad.
Gifts were opened, food was eaten, stories were shared. In that small living room of a very hardworking and loving family, I was reminded once again that making people happy is a surefire way to make you happy as well. I wasn’t sure who was happier, Hannah and family or I.
I’ve been fortunate enough in life that even though I’ve had to battle a rare disease such as Pompe Disease, I’ve been blessed to have been born into a family with moderate resources. I grew up never lacking in love and happiness. I was able to celebrate birthdays when I was a kid, open lots of presents and share precious moments with my family.
Some people are not as lucky. Not for lack of trying but simply because life throws them challenges that would make most people crumble. Yet, there are people like Carlo, Joan and Hannah, who despite the hardships they face, forge on.
I admire Carlo for being the man that he is. He never abandoned his family despite the enormous challenge they are facing. Joan is equally admirable for being the loving and caring mother to Hannah and a wonderful partner to Carlo. Their family is a great example of how parents should care for their kids.
From the brief time I met Hannah that day, I could see that she’s a wonderful kid, happy, smart, active and sweet. She has been battling with a condition for years and yet her demeanor does not show any negativity at all. I guess deep down inside her, she knows that the people around her love her immensely.
As night came and it was time to go home. I left with a so much joy in my heart that at least on this day, I together with my friends, made a little girl and her family happy. That’s one of the greatest feelings on earth.
I didn’t write this to tell the world of what we did. I wrote this to share with you a story of a 4 year old girl and her family. They’re going through so much yet strive hard to persevere. They deserve to be happy. They deserve to have people do good things for them. They deserve to be blessed. I am writing this in hopes that I inspire people to find deserving people in their lives and do some good for them.
Special thanks go out to Charles Paw of Digitalhub, Peachy Juban of ShortCrust Cake Shop, Cecile Van Straten of the famous chuvaness.com blog , Tito Pogi, (who refuses to be named but you know who you are), Pam, Julia and Janna. Thank you for making Hannah’s birthday possible.
If you want to make Hannah happy, drop me a message and I’ll get you in touch with them. You can also visit Hannah’s multiply site.
People often ask me how I am able to cope with my disease and situation. One of the answers to that is found in the lyrics of a Beatles song “I get by with a little help from my friends”. The truth is, I don’t think I would be where I am today, which is alive and kicking, without help from my family and friends.
Over the years, family and friends have supported me with my fight against Pompe disease. Whether it’s moral support or help with whatever medical needs I have, my family and friends have been there all the way.
Every so often, when life tries to pull me down, friends have a way of pulling me out of the dumps.
The present is a good example. A few weeks back one of my breathing machine’s broke. I’ve been using a breathing machine 24/7 for the past 5 or so years due to my battle with Pompe disease. It’s just my luck that in a span of 1 year I’ve had 2 machines break down on me.
I’ve been using a BiPAP Synchrony S/T for the past 7 years. It’s served me well but this particular machine was not really designed for the kind of use I put it through. It was fine for me a few years back when I was only on partial ventilation but the past few years I’ve been on it 24/7. So I take my machine everywhere I go. Suffice to say time and wear took its toll on my machines.
It’s now time to replace my machines and unfortunately the newer models of the synchrony doesn’t feel as good as the old ones. For some reason I’ve had difficulty adapting to the newer models. I think the time has come that I need to move to the higher types of machines, which are ventilators. Unfortunately, these machines are expensive.
A few of my friends learned about my situation. They took it upon themselves to try and help a friend out.
One of my friends Charlie got the ball rolling. He opened a new restaurant at Eastwood called DW Café. He arranged to have a benefit dinner and invited members from PhilMUG, the Mac club we belong to. Dinner was free and people were not obligated to give anything, but any donations would be welcome to help offset the cost of my machine as well as help PSOD as well.
Vic, another friend of ours that also belonged to PhilMUG found out about what Charlie did. He also thought of doing something to help me out. He messaged me early last week. He told me that he was running his first ever marathon. This wasn’t a fun run thing. It was an honest to goodness marathon! 42km!
He said he wanted to make the run more meaningful. So he decided he wanted to run it for me. He posted it on his Facebook page asking his friends to pledge any amount for each kilometer he would finish. The response on his Facebook page was great. His gesture multiplied because another friend of ours was running the same marathon.
Roland another friend, took Vic’s cue and dedicated the run as well. He took it a step further and actually posted it on our Mac club. Asking people to help a fellow Mac addict out.
The response was so humbling. People, who I’ve only known through the online forums I participate in, pledged towards the cause. It was unbelievable.
Last Sunday, March 21, both Vic and Roland participated and completed (Yay for them!) the “Dream Marathon”. The marathon started at 2am.
Both of them finished the race in quite respectable times given that this was their first marathon. Vic and Roland powered through pain and injury to finish the marathon.
The gesture of my three friends was very special for me. How much money they raised was only second to the gesture they showed. They thought of their friend and his struggles to fight a disease that has robbed him of most of his physical abilities. They took it upon themselves to help ease the burden of dealing with such a difficult situation.
I am so humbled by their gesture. Words cannot express what I feel inside. It’s not about the money. It’s about the thought and support they showed. I feel humbled because I know that God, through my friends has blessed me once again. Of all the people in the world that could use help, God looked favorably upon me and sent me friends like them to help with my struggles.
I wish to thank Charlie, Vic, Roland for spearheading these fund raising activities. I also wish to thank, the PhilMUG community headed by Elbert, Johannes, Chito, and the other moderators of PhilMUG for supporting my three friends in their venture. I wish to thank all the PhilMUG members who in one way or another supported the events. Even if I do not know some of the members personally, they still went out of their way to help a person out. I am forever in your gratitude.
I know that God has blessed me through people like them. I will do my best to ensure that the blessing does not go to waste. I will find a way to pay it forward by continuing to help other people with rare disorders in the Philippines. I want to show my friends that their help did not go to waste and that it would give birth to other good deeds.
I’ve lived through a lot of hardships in my life because of my disease. But how can I even start to think of giving up when I have friends like them who continue to push me forward. I fight my disease not only for myself but for my friends and family who continue to cheer me on. I fight for them as much as I fight for myself. They believe in me and that makes me continue to believe in myself.
Tonight I go to bed knowing that whatever struggles tomorrow will bring, I’ll get by with a little help from my friends.
Rare Diseases affect hundreds of thousands of people all over the world including their familes and people around them.
My family and I are part of the group of people who everyday battle constantly with a rare disease. I suffer from Pompe disease. Yet, despite the hardships we’ve been blessed and somehow was able to get by.
Not may people are as lucky. There are countless patients who have no access to treatment or simple medical diagnosis because they don’t have money or the means to get care. Apart from that, there’s little that’s being done to combat rare diseases.
In our country, there’s virtually no resources allotted to helping people who suffer from rare diseases.
My family and I, together with well meaning friends and partners have decided to make it our cause to raise awareness and look for ways to help people with rare diseases.
February 28 is Rare Disease Day. This year will be the fourth day that it will be celebrated. Spear headed by the EURORDIS and organized together with rare disease national alliances from various countries all over the world, Rare Disease Day’s goal is to create awareness for rare diseases as well as the millions of people that are affected by them.
The Philippines is celebrating not only Rare Disease Day but the 2nd National Rare Disease Week. The last week of February has been proclaimed through Presidential Proclamation 1989 as National Rare Disease Week.
The Philippine Society for Orphan Disorders which I am a patient advocate for is trying our best to create as much awareness and buzz for Rare Disease Week. Due to our limited resources we can’t afford big publicity or marketing campaigns to promote Rare Disease week. So I thought of doing an experiment.
I want to see if I, together with your (whomever reads this) help can use the power of the internet and social media to reach Steve Nash.
Steve Nash in the past has shown support for his friend Simon Bell. Simon suffers from Hunter Syndrome or MPS II, a rare disease. From what I know and have heard, Steve Nash is quite a nice guy. I want to get a message to him and ask him, if he can just record or give a message of support for people, especially children who are suffering from Rare Diseases here in the Philippines. I know that this simple message from Steve will generate a lot of buzz here in the Philippines and create the much needed awareness for Rare Diseases.
So please help me, get this message across. If you have Twitter, please post a link to this post in hopes that it will eventually reach Steve Nash. You can also tweet him at @SteveNash and hopefully he’ll see this post. If you have Facebook, please post this on your status or wall as well.
This might seem crazy but hey, we’ll never know until we try. If it reaches him and we get a message out of it then fantastic. If not, then I haven’t lost anything. In fact every person that reads this is one more person that knows more about Rare Diseases. That’s a victory already.
If you want to help people in the Philippines who have Rare Diseases please visit our web site at www.psod.org.ph or send me an email at juan (at) psod (dot) org (dot) ph. There are various ways you can help. We have a petition going on to ask our law makers to pass the Rare Disease bill, you can make a donation towards the Endowment Fund we’re setting up to help support the treatments and medical needs of patients with Rare Diseases. A whole lot of things.
So please, please, please, help me with my experiment. Please pass this on to others.
Remember Feb 21-28 is the 2nd National Rare Disease Week here in the Philippines and February 28 is the international Rare Disease Day. Check it out at www.rarediseaseday.org.
Let’s do this!
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!
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.
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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.
———- 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
http://www.psod.org.ph
