Getting by with a little help from my friends

People often ask me how I am able to cope with my disease and situation. One of the answers to that is found in the lyrics of a Beatles song “I get by with a little help from my friends”. The truth is, I don’t think I would be where I am today, which is alive and kicking, without help from my family and friends.

Over the years, family and friends have supported me with my fight against Pompe disease. Whether it’s moral support or help with whatever medical needs I have, my family and friends have been there all the way.

Every so often, when life tries to pull me down, friends have a way of pulling me out of the dumps.

The present is a good example. A few weeks back one of my breathing machine’s broke. I’ve been using a breathing machine 24/7 for the past 5 or so years due to my battle with Pompe disease. It’s just my luck that in a span of 1 year I’ve had 2 machines break down on me.

I’ve been using a BiPAP Synchrony S/T for the past 7 years. It’s served me well but this particular machine was not really designed for the kind of use I put it through. It was fine for me a few years back when I was only on partial ventilation but the past few years I’ve been on it 24/7. So I take my machine everywhere I go. Suffice to say time and wear took its toll on my machines.

It’s now time to replace my machines and unfortunately the newer models of the synchrony doesn’t feel as good as the old ones. For some reason I’ve had difficulty adapting to the newer models. I think the time has come that I need to move to the higher types of machines, which are ventilators. Unfortunately, these machines are expensive.

A few of my friends learned about my situation. They took it upon themselves to try and help a friend out.

One of my friends Charlie got the ball rolling. He opened a new restaurant at Eastwood called DW Café. He arranged to have a benefit dinner and invited members from PhilMUG, the Mac club we belong to. Dinner was free and people were not obligated to give anything, but any donations would be welcome to help offset the cost of my machine as well as help PSOD as well.

Vic, another friend of ours that also belonged to PhilMUG found out about what Charlie did. He also thought of doing something to help me out. He messaged me early last week. He told me that he was running his first ever marathon. This wasn’t a fun run thing. It was an honest to goodness marathon! 42km!

He said he wanted to make the run more meaningful. So he decided he wanted to run it for me. He posted it on his Facebook page asking his friends to pledge any amount for each kilometer he would finish. The response on his Facebook page was great. His gesture multiplied because another friend of ours was running the same marathon.

Roland another friend, took Vic’s cue and dedicated the run as well. He took it a step further and actually posted it on our Mac club. Asking people to help a fellow Mac addict out.

The response was so humbling. People, who I’ve only known through the online forums I participate in, pledged towards the cause. It was unbelievable.

Last Sunday, March 21, both Vic and Roland participated and completed (Yay for them!) the “Dream Marathon”. The marathon started at 2am.

Both of them finished the race in quite respectable times given that this was their first marathon. Vic and Roland powered through pain and injury to finish the marathon.

The gesture of my three friends was very special for me. How much money they raised was only second to the gesture they showed. They thought of their friend and his struggles to fight a disease that has robbed him of most of his physical abilities. They took it upon themselves to help ease the burden of dealing with such a difficult situation.

I am so humbled by their gesture. Words cannot express what I feel inside. It’s not about the money. It’s about the thought and support they showed. I feel humbled because I know that God, through my friends has blessed me once again. Of all the people in the world that could use help, God looked favorably upon me and sent me friends like them to help with my struggles.

I wish to thank Charlie, Vic, Roland for spearheading these fund raising activities. I also wish to thank, the PhilMUG community headed by Elbert, Johannes, Chito, and the other moderators of PhilMUG for supporting my three friends in their venture. I wish to thank all the PhilMUG members who in one way or another supported the events. Even if I do not know some of the members personally, they still went out of their way to help a person out. I am forever in your gratitude.

I know that God has blessed me through people like them. I will do my best to ensure that the blessing does not go to waste. I will find a way to pay it forward by continuing to help other people with rare disorders in the Philippines. I want to show my friends that their help did not go to waste and that it would give birth to other good deeds.

I’ve lived through a lot of hardships in my life because of my disease. But how can I even start to think of giving up when I have friends like them who continue to push me forward. I fight my disease not only for myself but for my friends and family who continue to cheer me on. I fight for them as much as I fight for myself. They believe in me and that makes me continue to believe in myself.

Tonight I go to bed knowing that whatever struggles tomorrow will bring, I’ll get by with a little help from my friends.

One Reply to “Getting by with a little help from my friends”

  1. Hi. My name is natalia and although you don’t know me i thought maybe i can ask you to help me. I am doing a report on pompe disease and i was wondering if i could get a sort of online interview with you since you live with it. I dont want to sound insenitive but it may help people who read my report to understand it better because not a lot of people know about it. Thank you for your time for even reading this message

Leave a Reply

Your email address will not be published. Required fields are marked *