Rare Moments Exhibit

rare moments presentation by patients

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

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

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

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

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

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

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

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

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

delivering a message during rare moments


Good afternoon distinguished guests, ladies and gentlemen.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Loosely translated in English it says.

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

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

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

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

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

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