Save Simon Movement

Update posted by jesus jr berame On Nov 13, 2019

SYNOPSIS OF SIMON’S HISTORY

On May 12, 2019, the date I would never forget. It was the day when I gave birth to a cute little boy. He came out through normal delivery. His weight was 3.4 kilograms with 4.9 centimeters in birth length, with blood type B. He had his monthly vaccination and fed through breastfeeding. He would only cry if he is hungry, sleepy or bored. Physically seeing him, indeed he is a healthy jolly little boy. But a couple weeks later we noticed that his eyes and skin were still yellowish as a normal child should not be. So immediately we went to his pediatrician and consulted her why he was like that. She just told us that probably Simon was just lacking exposure to sunlight, so therefore to say, we were advised that Simon should be exposed to sunlight for 15-20 minutes every morning which we followed. But after the succeeding months, his condition did not come to any better. Due to the location of our work in a far flung island, we weren’t able to consult his pediatrician for his monthly check-up , add the fact that Simon behaved so normal that we were not alarmed at all. He did not get sick at all. His appetite was also good. So we thought everything was in its shape.

But things were changed last September 30, 2019 when we consulted again his pediatrician because as we observed there was something wrong why Simon was still jaundice. His pediatrician requested for an abdominal ultrasound. Then we were advised to look for specialist, a pediagastro where in Bicol region there is only one whom we met Dr. Eleonora Sabico. She examined Simon and asked several questions about his present condition. She asked if we had laboratory test like ultrasound, blood tests. In that day we got the ultrasound result then instantly gave it to her. It was the day when my world suddenly crashed when Dr. Sabico told us that the results were not good. She explained that Simon’s liver is not in good shape. That there were already complications. She further explained that the cause of liver disease is too hard to identify due to various possible causes. After the consultation there were several medicines that Simon should be taking.

We were referred to see another specialist in Manila, DR. NOVETTE LAGUNZAD a pediagastro in MEDICAL CITY. She also examined Simon and asked for further laboratory tests where in the same day we were given new set of medicines for Simon. We waited for a week for the second consultation and for the laboratory results as well. When we went to Dr. Novette Lagunzad we presented the lab results then she told us that Simon’s liver disease could be biliary atresia as the indicators of the rare disease were seen in the lab tests and in Simon’s physical condition. So we were advised to set an appointment with Dr. Ma. Vanessa De Villa, Liver Transplant Surgeon. There the surgeon clearly explained to us Simon is suffering from Chronic Cholestatic Liver Disease r/o Biliary Atresia which the ducts draining bile from the liver are blocked or missing and the only possible way for survival is through a liver transplant.

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jesus jr berame

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I am a father of two loving kids, the youngest is Simon who diagnosed with Biliary Atresia.

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