Hooray for Hannah!

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.

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/.