Ayush was born in May 2005 in Kathmandu; Nepal. He is our first baby. So it was great moment for us. All memebers of our family were very happy. But the happiness didn’t remain for long time.

When he was at the age of three month, jaundice was appeared in his face and urine. Ayush's jaundice continued and we had consulted several senior Pediatricians from various hospitals to treat him. We did USG (Ultrasound), HIDA (………….…) scan and blood and urine tests. It was a quite complicated process that ultimately diagonosed as jaundice. When he was 4 months of age, the doctor determined that he have Billery Attresia. The doctor said that he couldn’t do further to cure our child because it’s too late for Kasai Procedure (an operation) and told that Ayush would die slowly day by day. Oh God!  we couldn’t control ourselves and started to cry.

We cried for so many days….. Hoping that there would be some remedy to save our child, we looked for some more senior pediatricians, consulted many people and obtained suggestions. We met 4 doctors and one of them suggested us to take him to Sir Ganga Ram Hospital in Delhi, India. We took him there. Fortunately, we got a very cooperative senior specialist of jaundice Dr Neelam Mohan to treat him. She invested 10 days to diagnose. At five months of age he had a liver biopsy, which came back inconclusive. It did show paucity of bile duct in liver. We had performed DMSA scan, MTU for renal function, x-ray, USGs, Cardiology to test heart condition. We also completed so many other tests.

At the age of 8 months, he was again taken to the doctor in Delhi and consulted with various doctors for different medical examinations. Due to high billirubin in his blood and bad liver function, the doctors suggested to have the Liver Transplantation as soon as possible. The liver transplantation was out of our capacity. Being working family, we were not able to pay the cost for the liver transplantation operation. Mother was ready to donate her liver to save the child but we were not able to generate money for the operation. Hence, we returned back to Nepal to collect money for the transplantation. We had visited many INGOs, NGOs and business houses for financial help (donation or otherwise) but we were not succeeded to collect enough money. Hence, most regrettably we had to give up the liver transplantation. Further, at that time we were not aware I about the liver transplantation and its effects. With constant efforts, we found some web sites and knew about Alagille Syndrome and life span after liver transplantation. According to the information obtained form the web sites; there is not longer life span even after transplanting the liver. Information obtained form the websites reveals that most of such patients live up to 5 years. We don’t know what to do. We would like to know more about the disease and treatment. If you know more about it, please tell us.

At present, Ayush's development is slower than normal baby. His activities are as normal as other baby except yellowish face and eyes. Itching problem is growing due to more bile in his blood. He is a bright, happy little boy who adores music and dance. He loves to watch and listen musical folk dance.

This is Ayush’s AGS story. Ayush is living with the Alagille Syndrome since he was 3 months. Now he is  2 years and 9 months old.  As per the doctor, we must be ready for liver transplantation. It costs Rs. 1.1 million Indian rupees (approximately US $ 30,000) which is out of our capacity. Actually, we are not well understood. So we need help of your suggestions, information and other support.

We highly appreciate you all who help us in this extremely difficult situation. We would like to request you to save our beloved son. God may bless him