Last August 14, 2011 The “Rare Moments Photo Exhibit” went on display at the SM Megamall. We also had a formal opening on the 15th, with special guests in tow.
The Rare Moments Photo Exhibit is the culmination of the Rare Moments activity, a project of the PSOD in partnership with Photography with A Difference, Canon A Team, Canon and SM Programs for Disability Affairs.
The first part of this activity was a “worry free day” wherein 13 children with rare diseases along with their families were treated to a day of fun at the Manila Ocean Park and Museo Pambata. The people behind these two establishments graciously opened their doors to these children and their families.
The children were treated to an awe-inspiring display of the underwater creatures housed at the Manila Ocean Park. After which, they proceeded to the Museo Pambata where they were exposed to various fun children activities and displays.
The amazing photographers of Photography With A Difference and the Canon A Team captured the whole day. Mr. John Chua, a famous photographer, heads this group.
The wonderful images that resulted from the worry free day went on display at SM Megamall this week. The goal of the exhibit is to help create awareness for children with rare diseases.
A formal opening was held last August 15, 2011. A simple program was prepared. Among the people who attended were special guests from the Philippine Society for Orphan Disorders partners such as Genzyme and Mead Johnson. Also there were members of the Canon A Team, Photography with A Difference, Canon as well as some of the top brass of SM Supermalls, host to the exhibit.
Part of the program was a presentation from the children with rare diseases and their parents. This presentation number was their small way of thanking donors and partners for all the support they continue to give the PSOD and their patients.
I was also tasked to give a message of thanks on behalf of the patients of PSOD. This is part of my work as the patient advocate for PSOD. You can read my full message below.
The whole event was a success. The patients and their families had a wonderful time during their worry free day and the stunning images that resulted from that will forever commemorate their joy.
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Good afternoon distinguished guests, ladies and gentlemen.
Life is a series of moments. Most people will have a lifetime’s worth of precious moments.
For patients with rare diseases such as myself, these moments are less certain. So it is important that we take these brief moments and create memories to last a lifetime.
When I was told about the idea of having the “Rare Moments” exhibit, I thought it was a fantastic idea. A worry free day for patients and their families, captured by brilliant photographers really appealed to me.
Families dealing with rare diseases face not only a daunting health challenge but also economical and psychological adversities. It certainly takes a toll not only on the patient but the whole family as well.
I was fortunate enough to be part of a family who has moderate resources and as such I am able to experience moments of happiness that I will carry with me for the rest of my life. Some aren’t as lucky.
Some patients and families hardly have enough for their basic needs. They are not able to enjoy a simple family day at the mall or a picnic at the park, moments that most people take for granted.
It may be trivial to some but to the families and patients of PSOD, those type of moments are the ones that last a lifetime.
In my experience, the most difficult part of dealing with a rare disease is not so much the physical challenges that go with it but more often it’s the emotional and psychological adversities that we are faced. We have doctors, nurses, pharmaceutical companies that help us deal with the medical aspect of the disease, but I am also glad that we have people like you who help us deal with the emotional and psychological part. It is through people like you who help nurture our souls.
A worry free day comes too far and few in between for our patients and their families. Some experienced it for the first time. So to us it is certainly a big deal. We would like to thank the people from Manila Ocean Park and Museo Pambata who have graciously opened their doors to accommodate some of our patients and their families. You have given them an opportunity to be filled with wonder and awe.
The worry free day was great by itself, but it’s been made more special because our talented friends from Photography With A Difference, Canon A Team and Canon captured those precious moments.
As we formally open the “Rare Moments” exhibit, please know that these stunning images and the memories behind it will be forever cherished by the patients and families that participated in it. Each image tells a story of hope and happiness. An image that captures a brief moment in time wherein the patients and their family members forget that they are facing tremendous challenges. For a brief moment in time, they are like most families who are simply enjoying time together.
We wish to express our thanks to the people of SM Supermalls, for giving us a venue to share these wonderful images with other people. Thank you giving us a stage to show the world that while we are going through tough challenges, we can still face it with a smile. A special thanks goes out to SM Supermall’s owners and top management for creating a program that caters to persons with disabilities. For creating a culture of inclusion that is carried out from the top managers all the way to the service personnel who man the malls everyday.
Words can’t express the gratitude we feel. Some of the patients and their families have prepared a presentation for you, our distinguished guests. But before that though, please allow me to borrow a few lines from their presentation. It goes something like this.
Kung ito man ang huling awiting aawitin
Nais kong malaman mong
ika’y bahagi na ng buhay ko
At kung may huling sasabihin
Nais kong sambitin,
Nilagyan mo ng kulay ang mundo
Kasama kitang lumuha
Dahil sa‘yo ako’y may pag-asa
Loosely translated in English it says.
If this is the last song I will sing
I want you to know
That you have been a part of my life
And if I have one last thing to say
I want to say
You have brought color to my world
You were with me when I cried
Because of you I have hope
It is because of people like you that patients, especially children with rare diseases now have reason to hope. Your love and support have encouraged us to keep fighting. We are here because of you. For that we are eternally grateful.
On behalf of the patients of the Philippine Society for Orphan Disorders, we humbly thank you from the bottom of our hearts. Thank you for helping us create “Rare Moments” that we will carry throughout our lifetime. We thank you for helping us not only live but helping us have a life.
I hope you enjoy the presentation number. Thank you and good afternoon to all.
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.
So I didn’t quite live up to my last post. Things have just been crazy lately.
Some updates…
On my infusions… They are going great. We’re getting to a point that we’re already comfortable with the routine that unlike before that the doctor stays with me the whole time, now he just makes sure it gets up to the highest rate and then he can go about his other duties.
That’s not to say we’re getting complacent. There’s still a nurse that oversees the whole infusion.
So far, so good. Let’s hope it stays that way.
On work… There might be some major changes. I’m actually at a crossroads. Well not quite there but almost. I’m thinking about what to do in the future. Where I’ll be happy and fulfilled at the same time find something that will help secure a future for me and hopefully a family as well. A guy can hope can’t he?
On personal life… Things are a bit boring lately. My life revolves around my treatment, work, PSOD and Singles For Christ. I’m not complaining that it’s boring. Sometimes boring is good. However I do need to do other things to add a bit of excitement to my life.
On a sad or rather disappointing note, one of my assistants/aides resigned. I always feel bad when that happens, especially now since I’ve gotten so used to him and that my life was actually going pretty well. I have a temporary aide now for about a month but I’m on the look out for a permanent one. Wish me luck on that.
I’ve also been having trouble with one of my BiPap machines. The new one at that. That really sucks. I’ve already sent it to HK. Poor dad, he had to fly all the way to HK to get it fixed. It didn’t turn out well. I guess it’s because it was a rush job so the service center didn’t really get to test it fully. I can’t send it back yet since no one is going to HK soon. Oh well. I’m trying to plan for future machines. I need to see if I can get some new ones.
There are other things that have been going on. I can’t recall all or I’m just too tired to post it now. Anyway hopefully I’ll be posting more.
In a few hours 2007 will pass and we’ll usher in 2008, a new year. I’m taking the chance to look back at the year that was.
2007 started out rocky for me. I said goodbye to a very important relationship and while we’re friends, I don’t think it will ever be the same. At that time I honestly thought that I would not be able to recover from that loss. I think most of us think that way when we’re in the middle of that experience. With the help of God, faith, family and friends things are much better now. While I’ve moved on I don’t think I’ll ever be completely over it or fine with it. Although never say never.
Things always have a way or working out. There’s a popular saying that goes something like “life is like a wheel, sometimes you’re up and sometimes you’re down”. From the gutter where I was, life has a way of picking you up. Good things came my way.
My mom and dad celebrated their 30th wedding anniversary. A milestone by any relationship’s standards. I’m glad to have parents like them. They show me the meaning of true love. While their relationship is not perfect, no relationship is they’re trying their best and have done great so far.
I also got a chance to be featured in Genzyme’s Annual report. They sent a wonderful photographer named Chris Kirzeder over to Manila to take my picture. That was quite an experience.
February came and we lost one of our classmates. J.P. tragically passed away when he was a victim of a stabbing incident. It’s always sad when people die needlessly. It’s sadder when it’s someone you know and shared a experiences with.
I was nominated as a finalist for “The Philippine Blog Awards” last March. Unfortunately I did not win. It’s well and good because the winners deserved the win. I was just happy to get the nomination.
My 30th infusion came on April. 30’s a big number and I was just happy that after 30 infusions I haven’t had any bad incidents with it.
Genzyme’s annual report also came out in April. I got a kick out of seeing my face on a publication for an international company. I think it came out well, thanks to the photography skills of Chris.
May saw some problems again for me as my Bi-Pap machine went on the fritz. Luckily I was able to have it repaired and eventually even added a new machine to my arsenal. I now have 3 Bi-Pap’s that I rotate. When you’re dependent on a machine for breathing, you tend to get paranoid. 3 machines are good safety measure.
I had quite a scare in June. I thought that something was wrong with my heart. Turns out that my Bi-Pap just needed adjusting. Everything turned out after several trips to the doctor. I’m happy that up to now, I’m feeling good with my new settings.
I feel bad that the second half of the year saw me blogging less. I got busy and found little time to write. It’s not to say that the second half of the year was uneventful. Far from it. It was still quite an exciting year.
The second half saw me attend my first SFC conference in a long time. Add to that it was the first time I’ve gone on an out-of-town trip without my parents in years. I’ve always been afraid the last couple of years to travel without family because of my health situation. I felt I was doing well enough that it would be safe for me to do so. So I did. I had a blast!
It was also during the second half of the year that I was presented with the chance to participate in the village elections in a way that I’ve never done so before. I actually ran for “Bargangay Kagawad” or as a member of the village council. It was a great experience and I met some great people. My running mates were really a good bunch of people and I was happy to get to know them. Unfortunately we all lost to the incumbent. Still I will always treasure that experience. I’ve learned a lot from it.
It was this year that I also turned 30. If you know me and my story, you’ll know how important that number is to me. When I was growing up and was first diagnosed with Pompe disease the doctors we consulted earlier on told us that I might not live past the age of 30. So, that stuck to my head. It seemed at that time that it might be the proverbial finish line for me. With Myozyme, the treatment I’m getting, I’m feeling much better and I see myself really living past the age of 30. The past 30 years of my life have been great! Not perfect but great nonetheless. I’m truly thankful to God for giving me a wonderful life, loving family and great set of friends. I’m praying that the next 30 years or so of my life will even be better.
I was given the great honor of being named one of the 5 most inspiring PWD (Person With Disability) entrepreneurs for 2007. The award was given by the Go Negosyo group, an organization that is promoting entrepreneurship. I’m not sure if I truly deserve the honor but I’ll take it nonetheless.
These are just some of the things that have happened to me this past year. There are a whole lot of other things that transpired but I’d rather not bore you with it. Needless to say that as a whole it’s been a great year. I have a lot to be thankful for. 2007 has been good.
Tita Valderama wrote a nice feature about me on the GMANews.tv web site last November 29, 2007. I didn’t get to read it until a friend pointed it out to me. That was a two weeks ago but I only to blog about it now.
Normally I’m hesitant in talking about articles about me because well it will sound like I’m bragging. That aside, I’m writing about this particular one because it’s really worth mentioning. The article is well written. Even if I wasn’t the subject I’d still write about it.
So please if you have the time check out the article here.
Thanks Tita for the wonderful article.
I’m very happy to say that the PSOD has started its partnership with Ayala Foundation USA. The Ayala Foundation USA has graciously allowed us to use their facilities and resources to accept donations from people in the United States.
Donations sent to the PSOD via the Ayala Foundation USA is tax deductible.
The PSOD is the organization we help put up to assist People with rare disorders here in the Philippines. Our country has very limited resources and people with rare disorders have no access to these limited resources. We’re looking to change that.
Everyone has a right to live. It doesn’t meant that if you’re afflicted with a rare disorder that you have less rights to medical treatments and resources. Unfortunately most resources are put to diseases that are more common. There’s nothing wrong with that. But there’s also nothing wrong with helping people who are in the minority.
If you’re residing in the United States and want to help the PSOD out, please donate via the Ayala Foundation USA. Please specify that the money you’re giving is for the PSOD. The money you’ll be giving will be put into an endowment fund that will help fund our programs for the years to come.
Thank you in advance.
Links to AFUSA
Donor Page
Projects page where PSOD is listed
