On 27 December 2008, I decided that I wasn’t patient enough (a trait I got from Mom!) to wait until 6 February 2009 to meet my mom and dad. I was born with the scale “groaning” at 1.3kg. I only had a few seconds each to be with Mom, before I was whisked off to Neonatal ICU (NICU) where I was connected to tubes to prevent me from choking. I was diagnosed with a Tracheal Oesophageal Fistule (TOF) with Oesophageal Atresia (OA), which basically meant that my food pipe ended blindly and not in his stomach. And so my journey began...
At about 4 weeks old, I was diagnosed with Fanconi Anemia (FA). Fanconi anemia (FA), named for Swiss pediatrician, Guido Fanconi, is a very rare, primarily recessive genetic disorder. But my Mom never accepted the diagnose as a death sentence. She is a Warrior of the fiercest kind (I'm pretty sure she's the descendant of a Viking and a Spartan and Wonder Woman.) and she raised me to be a warrior as well. Not only did she raise me as a warrior, but also as a faithful servent of God. Again and again God showed us the power of faith and prayer as He performed one after the other miracle on me.
My entire life was a series of medical challenges. Every time I conquered one obstacle, the next one aroused. My medical expenses was beyond any average person's income and included therapy, medication, 4 weekly blood tests, hospitalisations, small school education, hearing device ..to name a few. BUT..despite all of this I was the strongest and bravest boy I could be - for my Mom and for God. I took everything in my stride with a smile and ALWAYS has a "thumbs up" for friend or stranger. FA did NOT determine my life. God did.
Many people have told me they don’t think they have the courage to read the book. My answer is, you have to find the courage to read the book. Because you must be brave to live in this world. And this world is imperfect. But we need to learn how to live with the pain, because with deep pain also comes deep joy. If you’re going to live with an open heart, you need to accept it all.