Nelson's Story

Isaiah’s ALGS Story

Meet Isaiah!

At the age of 2 months, Isaiah was misdiagnosed with Biliary Atresia because of the yellowish skin. At first, I doubted our 3 pedia doctors- Hematology, General Pedia & Pedia Surgeon. In the end I entrusted Isaiah to them because according to our Pedia Surgeon, we need to do the Kasai procedure as soon as possible. Health is at stake here. If we did not do the surgery we were told my baby would have cerebral palsy. We needed to do the surgery at his golden age of 1-3months old. Aftermath, the surgery was done. The surgeon told us, thank God there’s no Biliary Atresia. After the surgery, Isaiah had a seizure and his doctors did not come to give him first aid. I was very confused that time. Afterwards he was discharged without their consent because I knew there was something wrong. The surgery was a big mistake! The liver biopsy was incorrect result so I sent my baby to Manila where I met Dr. Gregorio, Hepatology doctor. As I opened her door she smiled and told us Isaiah has Alagille Syndrome. She eliminated all the medicines prescribed by the pedia surgeon and gave him vitamins A, D, E, K & calcium. We did the different labs & ultrasound. We found out that he had posterior embryotoxin in his eyes, pulmonary stenosis in his heart, butterfly backbone and undeveloped liver that needs LIVER TRANSPLANT.

After monthly medical examinations and everyday maintenance of medicine our pocket became empty. In order to sustain the needs of my son’s hospitalization our debts popped up. For almost 3 years Isaiah is still on medication and we were advised by our doctor that my son needs to undergo a liver transplant. The cost is 5 million pesos. How can I produce that big amount since my husband is the only sole earner of my family? We don’t have any assets and liabilities. I mourn day and night, I feel terrified for my son’s condition. There’s times that I woke up at night just to check if my son Isaiah is still breathing or alive. I’ve become stressful, haggard and always have a lack of sleep because my son wakes up 3-5 times scratching his whole body. He rubs his face on our bedsheet and his feet on the cemented wall. We tranquillize him every day and night to take off the itch, He uses a laundry brush scrubbing his body in tears of exhaustion. We end up at night with bloody bed sheets, wounds on his face, digging his ears of having flowing blood. He had never a day without the itch, scabs on his face as if he wants to rip his skin off. He has never felt what it was like to have smooth and soft skin without scars and bulky calluses from frequent scratching. His body was covered with lumps called cholestioma.

LITRO Organization, an organization of Biliary Atresia babies both pre and post liver transplant, taught me on how to raise funds and where to have the cheapest liver transplant. They introduced Apollo hospital located in India. Apollo caters the cheapest liver transplant that costs 2 million pesos. It’s cheaper compared to here in Philippines but still it’s expensive. We don’t have any hundred thousand what more for millions. We shoulder all the expenses and our government does not help us in terms of healthcare expenses. In order to reach our goal, I distribute envelops to my relatives, friends and neighbors. They also help me dispense it. Some of my classmates send a monetary gifts and I also sell anything to help increase our money for transplant but still it’s not enough. I ask my husband to help me find a way to raise our funds but he refused because he is shy. We always quarrel with each other because of money issues. I feel that he doesn’t want to help raise the funds for transplant because of shyness. His brother told me it’s embarrassing posting in media the condition of my baby. As I heard him I weep and pity for myself. I was humiliated. Yes, I’m shameful but as a mother I will do anything just to cure my baby. As I see him every day suffer. I feel guilty and mercy to his situation. I’m afraid of losing my baby and prolong his liver transplant because his liver is getting worse and it will affect his other organs.

~Robigaile Buante, Philippines

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