Alagille Syndrome

Alagille Syndrome(AGS) Hi everyone, I'm Ayden Lazaroo and I'm a 3 years old Malaysian boy of Chinese-Portuguese origin. Let me share with you how special I am. I am born with Alagille Syndrome, which makes me one very special baby in 100,000 births. Alagille syndrome is a genetic disorder that affects the liver, heart, eyes and other systems of the body. Problems associated with the disorder generally become evident in infancy or early childhood. This disorder is inherited in an autosomal dominant pattern. This very rare disease is quite interesting indeed. No doctor can predict how severe the defective gene can affect a carrier. Some kids have no symptoms at all, others like my daddy and Ceh-Ceh (big sis), are so mild that they don't really show much except for a heart murmur. While special ones, like me, may have been diagnosed with prolonged jaundice after birth and continue to suffer from severe symptoms that makes certain organs, such as the liver, becoming unhealthy.

My mommy and daddy are praying that my illness will go away, as some very lucky kids do, by the time they are around 5 years old. Why do their symptoms go away? Nobody knows. Why do some never go away? Only GOD decides this.

Yes, it's common for some aunties and uncles to think I'm younger than my age as I can still fit into a 12 months old baby's clothes. This is because the bile salts that I need to break down fatty foods do not flow out enough. My skin is also yellow because my liver cannot flush out the toxins from my body, the bad things that I don't need still flows in my blood and these poisons my liver even more. Doctors say this is because the ducts in my liver are not as much as and are also much smaller than a normal kid's. So, it's like a clogged drain. As more and more toxins gather, the higher my bilirubin or jaundice count is and the worse my liver becomes.

Will all this go away? Doctors say that I need a new healthy liver now and everything will be fine. Then, I'll be able to run and play catch with my 1 year old neighbour, R. Wouldn't that be so much fun?
Click on to see me do my impromptu penguin dance. That was lots of fun too, but I only showed this once to my mommy and you are lucky my aunty Phebe was quick with the camera, tee hee.