Cesar’s Story

Sometimes a story is so heartbreaking that you can’t help but be affected. Cesar’s story is one of those.

When Cesar was grade 5 he had an accident and hit his head. At first the family thought nothing of it. Coming from an impoverished family, they really didn’t have enough for basic needs so they decided to forego the precautionary medical checkup.

A month after the fall Cesar had a fever for three days. 6 months after the family noticed that Cesar was having a hard time walking. He was dragging his feet. Even at this point the family was still unable to bring him to the hospital due to lack of resources.

It was only until Cesar couldn’t walk any more and with the help of a family were they able to bring Cesar to the hospital. The diagnosis was that Cesar had a dislocated spinal cord at c1 and c2. Due to the length of time between the injury and when a doctor saw him, an operation was not viable anymore. Add to that he contracted urinary tract infection.

Cesar eventually lost physical abilities and is now dependent on a ventilator. He can only move his head and shoulder.

Cesar’s story is tragic because it could have been prevented. The lack of a good healthcare system in our country forces people from impoverished backgrounds not to seek medical attention, which in return makes it more complicated in the long run.

Now almost 23, Cesar has lived 5 years of his life confined to an orthopedic hospital. It wasn’t only until June 2008 that he was able to go home. Aided by a kindhearted family that got him his first ventilator, Cesar has been at home since that time.

The bed is Cesar’s prison. He spends most of his day in bed, only being able to sit up if assisted. His mother or sister also needs to feed him and care for him 24/7.

A few days ago Cesar’s ventilator broke. I only found out a couple of days after but during that time his mother and sister took turns manning the ambubag to help Cesar breathe. For those who don’t know what an ambubag is, it’s a manual balloon or pump that helps push air into the lungs. Imagine doing that for 48 hours.

I felt a deep sense of sadness when I heard about what happened. Being on a BiPAP/Vent myself I know what it feels like. When you can’t breathe on your own and rely on a machine to breathe, every day you’re playing a game of chance. If it breaks you’re in for a tough time. That’s why I’m so anal about my machines. I have backups for the backups.

Cesar is not as fortunate as I am. He only has one. So when it broke, it was a long 48 hours for him.

Luckily I was able to get in touch with a man from Pampanga who has a respiratory care business. He said that he would be happy to drive to where Cesar lives, hook him up on a back up vent and take Cesar’s vent and repair it. He gave a good price on it. So I said let’s do it.

I put out a shout out on Twitter and Facebook. Some friends expressed interest in helping Cesar. I was able to get some pledges for money to cover the expenses to fix the vent.

Once the vent is fixed, I’m hoping that I can rally more people to donate towards getting Cesar a backup ventilator. The guy doing the repair has the exact same vent that Cesar uses. He’s willing to let it go for a fair price. I’m hoping that with help from people we can raise the money needed to do this.

If you want to help, please send me a message by leaving a comment below.

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

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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.

Hooray for Hannah!

With the Cordoviz Family

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.

bq. 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”:http://peachyjuban.com/ 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.

It's an iPad!

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”:http://www.facebook.com/pages/Digital-Hub-Apple-Premium-Store-Philippines/153969503979, “Peachy Juban”:http://peachyjuban.com/ of “ShortCrust Cake Shop”:http://www.facebook.com/pages/Shortcrust-Cake-Shop-by-PEACHY-JUBAN/125411620449, Cecile Van Straten of the famous “chuvaness.com”:http://www.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”:http://hannahysabelle.multiply.com/.

Stop This Train

bq. “Stop this train I want to get off and go home again
I can’t take the speed it’s moving in
I know I can’t
But honestly won’t someone stop this train”

That’s a verse of John Mayer’s “Stop This Train”, currently my favorite song. I like it not just because it has good melody but I simply love the lyrics of this song. The lyrics capture what I’ve been feeling lately.

The song is about life going by quickly and the fear of getting older, the fear of losing your parents and going through life on your own.

John and I are roughly the same age and so I am able to relate to his songs a lot. I’m at the stage of my life wherein I’m not young but I’m not old as well. However due to my circumstances I feel as if I’m older than I am.

At this point in my life, conventional wisdom says that I should have some success at work, married and starting a family. I have none of those. I have a good job but not the kind of success that I pictured I would have. I don’t have children nor am I married.

In fact if I don’t look in the mirror, I feel and sometimes act like I’m just in my mid twenties. Not a care in the world. I don’t have any major responsibilities save for myself. my life is my own, I do as I please.

Sounds fun doesn’t it? But it honestly made me think about life. My parents are getting older, I’m getting older, time is running out. What have I done with my life?

In a blink of an eye, I suddenly find myself at the mid-point of my life. I try looking back at my life. I’ve had a good childhood. In fact I miss those times. Life was much more simple.

I’m struggling to find meaning. I’m struggling to find direction. Where do I head to, knowing that my life is not like most people. What will I do when my parents are not around? I spend a lot of time with them. Lately it’s just been the three of us. My brother just got married and starting his own family.

Life is just going by so fast. Like what the song says, I want to stop it and go back to the beginning.

However the song also says that a person should be happy where he is at whatever particular point he is in life. Life has different stages, each with its own perks. We’re at the right point in our lives at the right time. It might not seem evident at times but it’s true.

Even if I say that I want to go back to the beginning, I say that only because I don’t want to lose the people around me. I do not however want to go back to being a teenager. I like where I am right now and I think age and time has a way of doing that to us.

We can’t stop this train. We can’t stop time and life from happening. We just need to embrace it as such and try to make the most out of it, even if we have to take different tracks in life.

Life is indeed going by quickly. We just need to keep up.