Juan Day at a Time

I just read the blog www.fightpompe.com today. It’s not about the usual interests I have like fashion and hair tips and mother booboos. It’s about the struggle of a young handsome man named Juan Magdaraog who suffers from Pompe disease, a rare illness which attacks one’s metabolic system causing damages in the body’s muscular and nerve cells. He has had Pompe since he was 10 years old, and from what I surmise, he has been reliant on breathing machines and, wheel chairs, and enzyme therapy for the most part of his life.  But in spite of his struggles, he has accomplished a lot of things like finishing a university degree, working, writing for a magazine, blogging, and even starting a small business. Now that’s a feat, even for most of us who are far, far healthier.

After reading two pages of his blog, I find myself suddenly bursting into tears. No, definitely it’s not the feeling of pity. I’m pretty sure that this isn’t what Juan has in mind when he writes in his blog. Maybe it’s the mother in me. Maybe it’s how I sometimes don’t appreciate the beauty of life. I am touched by his simple (but intelligent!) take on how he bravely faces his life with hope and faith one day at a time. How he sometimes questions some things he doesn’t understand, and tries to unrelentingly seek answers from others. How he sees something positive in his battles, and how he accepts his life as a blessing.  For these, I am humbled and inspired.

Thank you, Juan, for waking me up from this slumber. I realized that you are a blessing sent to people like us who forget that life is a beautiful gift, and the world is a wonderful place to live in. You earned an unknown soul in your prayer brigade. From now on, even though you don’t know me, I’ll be praying for you too.

Twenty minutes, and I still can’t stop crying.

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I ‘hope’ Juan doesn’t mind me sharing his speech here (taken from his blog) when he was invited at the 47th Annual Convention of the Philippine Pediatric Society. He is intelligent, compassionate, and most of all, funny. How could anyone not love him?

“Good morning ladies and gentlemen. I am honored to be here in front of you. Pediatricians hold a very special place in my heart. So much so that I was once asked “If I could choose the profession of my future wife, what would it be?” My answer was “a doctor, pediatrician to be specific”. I just feel that pediatricians are special breed of doctors. It’s not enough that you’re a good doctor, a pediatrician needs to be much more patient and compassionate because their patients are children. In fact right now, the doctor that administers my enzyme replacement therapy is a pediatrician. Well, it’s probably because I still act like a child sometimes.

Today I’d like to start of my brief talk or sharing if you will with a quote about hope. It goes…

The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they both lead to the same destination. ~Marion Zimmer Bradley

The author is an American novelist. This quote leads me to a conversation I had the other day with a father of a child with C.H.A.R.G.E syndrome. He narrated to me that when his child was born, barely a month old, he had a friend who also happened to be a doctor, tell him to give up on their child. It would be such a waste of economic resources as well as a huge burden to their family. There’s little chance that the child will have any sort of meaningful life ahead. The father refused to do that. With hope in his heart and with strength of conviction, he and the family pushed on. Today, his daughter is doing well. A lot of her problems have had remedies and she’s improving slowly but surely.

Now even if the outcome was different and the child did not improve or worse died, it would have been easier to go through that journey with hope in your heart than despair weighing you down. This is not to say that we all should have blind faith and believe that everything will be ok. But we should always keep hope in our heart.
My life is a story filled with hope. As you’ve seen in the video that was just played, I am receiving Enzyme Replacement Therapy, something that was not possible just a decade or more ago. Yet here I am right now, benefiting from it.

When I was young and first diagnosed with Pompe disease, we were told that I might not live past the age of 30. There was very little work being done about Pompe and that I may not see a treatment or cure in my lifetime. Well, I’m 32 now and I think it’s safe to assume that I’m still alive.

My parents never lost hope. That’s also what they instilled in me. While at that time we didn’t know how things would turn out, my parents always taught me to believe. Do what you can now, try your best but keep hope in your heart that just around the corner something good is coming.

One of the first doctors that took care of me, said while we don’t know whether or not we’ll see a treatment or cure in your lifetime, we should prepare for that in case it happens. He asked me to focus on my diet, keeping healthy and staying strong.

True enough, a few years shy of my 30th birthday I received my first infusion of Myozyme. The first Enzyme Replacement Therapy for Pompe disease. This has improved my life considerably allowing me to surpass the age that I was told I would not exceed.

Hope is what got me through those years. I’ll be honest there were times that I was about to give in to despair but somehow, hope found a way. Hope is motivation. Hope allows us to win our small battles everyday.

I am here today as an example of what hope together with the compassion, determination and support from doctors like you can become. I’m using my life in order to represent patients with rare disorders. To convey a message to the world that we deserve a right to life as well, that we shouldn’t be written off just because our situation is not as ideal as one would like.

Modern science has improved leaps and bounds. We now have access to technologies that were once but dreams. The chances for improving lives of patients are better than ever. However sometimes these medicines or treatment will take time, hope is what will get people through in between.

When families first realize that their child is sick, the first thing they do is bring the child to a doctor. You are their lifeline. They look to you for guidance. They look to you for hope. While I understand that there will be situations wherein there will be little that can be done, hope should always remain. For we can’t know for certain what the future will bring. I guess what I’m trying to say is that it’s just not about treating the physical symptoms it’s also about nurturing the soul.

Christopher Reeves more popularly known as superman, one of the people that I admired in this world said, “Once you choose hope, anything’s possible”. Anything is truly possible with hope. The strength of the human spirit knows no bounds.

As I continue to live my life with this disease, uncertain of what the future brings, I have hope in my heart that as long as I continue to do the best that I can, things will be fine. In the case that things don’t life is still certainly infinitely better with hope in my heart than despair weighing me down. Also when a person is hopeful it radiates and makes others around him hopeful as well.

In life all that we can really ask of ourselves and of others is to do the best that we can with what we have and leave the rest to God. Whatever will happen will happen.

As I close this talk of mine, I would like to extend my sincerest gratitude to the doctors that I’ve had the pleasure of working with all these years. Dra. Sylvia Estrada for the wonderful care that she and her team has given me. Dra Padilla, Dra. Silao and Dra. Dela Paz for their tireless efforts in helping the Philippine Society for Orphan Disorders as well as looking after patients with rare diseases. The wonderful team at the NIH who do so much for patients like me.

I’d also like to thank the efforts of the people who work for companies like Genzyme who despite the small numbers of patients with rare disorders make a huge effort in coming up with treatments to keep us alive.

The compassion and understanding of these people as well as tireless efforts in ensuring that patients like me have a future will forever be remembered. My life is possible through them.

I would like to leave you with these words from an unknown author. When the world says, “Give up,” Hope whispers, “Try it one more time.”

Oh, if there are any young single pediatricians out there… my number is….

Thank you very much and have a great day ahead of you.”

Juan Magdaraog
Patient Advocate – Philippine Society for Orphan Disorders