Since the day he was born, our baby Oliver has been through more than most of us have in our entire lives. Without warning I was told that Oliver needed to come out early due to complications with little to no amniotic fluid. The doctors nor us had any idea what we were in store for. At 35 weeks, November 14, 2012 Oliver Douglas Stanek was born. He was at a healthy weight of 5 lbs 5 oz for his age. At first glance we thought nothing was wrong, he looked like a healthy little boy! Who knew that within the last 24 hours, things could take such a dramatic turn.
Oliver was born with renal and liver failure. His bilirubin levels were off the charts and it seemed like the doctors had given up hope. There is nothing worse than the thought of losing your child. It's something that no one dare think about, and yet we were living in it. Thursday to Sunday had to be the longest 4 days of my life. When Sunday came around, it was like a miracle was happening. Oliver started showing signs of progression. Our little baby was healing himself. Words can not explain the joy we felt that day. The doctors were baffled, still trying to figure out what was wrong with him, or why this even happened. We had a few potential diagnoses, but nothing that really made sense.
Finally, after 2 and half months spent in the NICU, he was finally well enough to go home and treated out patient. This was so exciting for us, knowing our little baby was finally going to come home with us! Oliver has been such a joy to be around. His demeanor is so calm and happy, you wouldn't even know he was sick. Since then Oliver has been suffering from frequent blood transfusions and multiple skin lesions.
After 8 months of scratching our head, something had finally come into light. Oliver was diagnosed with Congenital Erythropoietic Porphyria (CEP); an extremely rare metabolic disorder affecting the production of heme. At first it was hard to believe because this disease is so rare, only 250 reported cases in history have been made. How could this be? CEP causes porphyrins to build up in your bone marrow, and the skin, causing shortening of life of red blood cells and extreme photosensitivity to sunlight and artificial light; a living vampire. In some cases it is known to effect the Liver and Kidneys as well. Things were starting to make sense, since he was severely burned on the whole left side of his body from the phototherapy to decrease his bilirubin. Which at the time, was another mystery. Not mention the fact that he suffered from multiple bone fractures due to vitamin D deficiency.
Fortunately, due to recent studies, there is a cure for his symptoms through chemotherapy and bone marrow transplant (BMT). This means Oliver can live a normal happy life! This doesn't mean he disease free, it just means he wont be symptomatic.
Everyone's support as been overwhelmingly helpful. Without our friends and family, I'm not sure we could have done this. Really, anything helps. Even if its only $5, we would appreciate anything. If nothing else, please share. Please be a part of Oliver's recovery and we will be forever grateful.
Thank you for taking the time to get to know Oliver, and his journey through his first year of life. Thank you again for your ongoing support, and God bless.
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