Thursday, September 23, 2010

Before the beginning...

I'm Jason.  Jason M. Weaver if you need the whole name. I'm married to a wonderful woman, Beth, with three incredibly beautiful children. 2 daughters, Kara and Maycen, and my inspiration for this project, my son, Denim. 

Denim was born in April of 2009. He seemed perfectly fine at birth, but for his first three weeks, he always seemed to have a heavy cough. We took him to the hospital when he was about 3 weeks old for some tests, and one of his x-rays showed a cloud.  The cough cleared up, and we never found out what was causing it, but the cloudy x-ray, with still no explanation, brought a more serious problem to a doctor's attention. My son was born without a gall bladder (not so important), or the bile ducts from the liver to the intestines(VERY important). He was born with a rare liver disease called Biliary Atresia.  When he was a month old, he had a major surgery called a Kasai Procedure to connect his liver directly to his large intestine.  The procedure is very rare, and only works about a third of the time. It worked with my son.

Denim is doing incredibly well at 17 months. You'd never know that anything was wrong with him. But things can change very quickly with this, and he will most likely need a liver transplant by the time he's 30.  Most kids with Biliary Atresia, or B.A. Babies, don't do as well as Denim.

I recently became friends with someone on Facebook going by the name Artoo Katee. R2-KT is an R2 unit droid built by a member of the R2 Builders Club, in memory of a little girl, Katie Johnson, who died of cancer several years ago. Her father, and the builder/owner of R2-KT take the droid around the country to different conventions and charity events, teaching about cancer.  Please check out Artoo Katee's homepage,

Being inspired by Artoo Katee, I decided I'm going to  build my own R2 Unit droid, dedicated to my son, and the many other children suffering from Biliary Atresia and other pediatric liver diseases. I know it will take a lot of time, several years probably, but I think it will be worth it.
I discovered the R2 Builders club through Katee's homepage. Through them I am getting plans and meeting people who can help me with this.

I was debating whether to call my Droid R2-DW, for Denim Wayne, with a blue color scheme, or R2-BA, for obvious reasons. I settled on R2-BA, because, this isn't just for my son. The color scheme will be yellow and green, representing pediatric liver disease, and organ donation respectively. The familiar, or nickname of my Droid will be Bili

This Blog will chronicle my "Journey to Bili."

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