Bugging ‘Fight Pompe’

I’m not sure if you would agree with me but it seems that in today’s long list of links to our friends on our personal blogs, the longer the list gets the less personal it becomes. I’m here to start a small experiment of sorts where every now and then I do a spotlight on one blog that I link to.

The objective is really to give a face to each link, in the same way that this great book called the Cluetrain Manifesto sees the market as people and not a list of demographics.

In a way, this project is a sign of thanks to the many people who link back to me. I can’t promise that I’ll cover everyone immediately. This is because I want to post something more meaningful than “this guy’s blog is nice. I met him several months ago in a conference.” So please pardon the intro. I felt that I needed to explain this project in detail. Besides, it finally gives some direction as to why I call my blog ‘A Bugged Life.’

I would actually encourage bloggers to do this on their blogs. Though the Internet is the new social tool, blogrolls are like a stack of kiddie toys you line up on the stands – they all look the same. As a reader, the first thing I’d like to know when I read someone’s blog is who he or she reads and why.

Hoookay that was long. *whew* Up first is Fight Pompe, written by Juan “Dickoy” Magdaraog. You can find him listed as “Dickoy” in my blogroll.

Fight Pompe is an advocacy started by Dickoy to make people aware of the complication known as Pompe’s disease. I’ll allow Dickoy to say a little bit about himself from his blog

My name is Juan Magdaraog. I suffer from Pompe Disease, a rare metabolic disorder. This blog was made to chronicle my fight against Pompe’s Disease as well as to hopefully impart whatever I’ve learned going through this illness. Read more about me.

I have met Dickoy in many occassions. I used to work for his father in an HR consulting firm as an intern. Dicks and I also share the same affiliation to PhilMUG as well as other our love for technology and online publishing (blogging).

Dicks has touched my life in a way that no other person has, with his cheery disposition, sharp mind and humor which emanates from his chair and breathing apparatus. I’m glued to the guy when he talks about his aspirations and believing that anything is possible if you put your mind to it. You see, the guy has achieved so much in spite of the many odds working against him.

Fight Pompe is one of his latter projects that also serves as his personal blog. He talks about life as the “Chairman,” his encounters with young people like us who have Pompe’s, as well as promoting a fund-raising campaign. One of the fund raisers is a really cute shirt designed by his friend May Ann (art on left). You can read more about the shirt design here. Bili na!

Dickoy is the creative director for a web design company which he started with a bunch of friends and his brother. He is also a regular columnist for m|PH.

By Jayvee Fernandez

Jayvee Fernandez is a tech enthusiast and sitting Techbology Editor for The Philippine STAR.

He is also an EAN certified SCUBA Diver and underwater photographer based in Metro Manila, Philippines. His photos and videos have appeared in various international and local publications including Random House Germany, Discovery Channel Canada, and CNN.

One reply on “Bugging ‘Fight Pompe’”

Dear Dickoy,
Hey man,I have seen you yesterday night in your very impressive appearance in PIPOL and I humbly admire with your outlook and views in life. You are correct Akhe that all of Us created by God for the purpose. I want to relate to you one story that I have heard from one of the muslim scholar. During the time of prophet Moses(Alayhi Salaam)there is one blind boy by birth setting on the stone on the nearby river as he heard his fellow youngster having fun swimming and playing. As Moses saw the boy ,his heart filled with pain as he see the blind boy situation and his eagerness to join but he cant because he’s blind. Moses start seek and ask permission to God to give sight to the blind boy. God answer Him saying ,Oh Moses I am the All Knower and I created him for a reason. But God answered the prayer of Moses to show Him His Greatness as Creator. The boy was given sight and as soon as He see the other youngster ,he hurriedly rush thru them and start drowning the other youngster one after another.God prepare ourselves into a different form and fate. We always have to thank God for His being so Most Gracious and Merciful whatever life he gave us. The most pleasing in the eyes of God is the one who recognised Him as the Only One and True God to be worshipped just like we Muslim did. We never shared anyone to His greatness and we never pray on behalf of His other creation just like all the people did except the Muslim. As you have heard the suicide bomber offered their lives for God to stand and shook other to protect His Oneness and establish Monotheism on earth. Other people given all the beauty of life but instead abused it and some of them commit suicide without having found the tranquility that we can only found in remembering Him.As God says in the Quran : “In remembering me do hearts find rest”Look at the people beside you,normal and ask them if they recognized their creator. You will noticed they are blind and no idea. Try to see the muslim in Quiapo in the Golden Mosque,they go rushing 5 times a day to prostrate and seek for the mercy of their creator. However,non-muslims will not believe them but for sure muslims are the inheritance of paradise.Why,because they know their God without a doubt. By the way my prayers for your recovery is always there although we are in different religion and if God allows me this coming Hajj and you are still alive I will ask for your good and may ALLAH guide you and save Us from the Hellfire whose fuel are men and stone. Be strong Akhe,if Godswill he will give your wish.God is miraculous,I have wife having an ovarian cancer and two years ago she is diagnosed.The first word came into my mouth is Alhamdulillah or thanks be to God. You know if you are a muslim and God give you trials it does not mean He hates you. God loves to put his servant into trials to test them the level of their faith. Now, my wife is still alive and last year he gave birth to our 3rd son Muhammad and this year Inshallah another baby will come as precious gift from Him as a reward of being patient and obedient to Him.Just remember my advice you must know Him and nothing to be afraid of,we are all strangers in this world and permanent in the hereafter so,this is the place you have to be prepared.

Note: Akhe is brother


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