Sunday, October 3, 2010

Sunday Sharing: We should be {Frugal} with our Money but Never with our Hearts, Our Love or our Compassion for Others Featuring Jason Weaver

This week on Sunday Sharing I wanted to feature Jason Weaver.  So many people want to help and educate others about pediatric liver disease and don't know how...Biliary Atresia, the disease my daughter was born with is the most {common} pediatric liver disease and yet I had never heard of this disease prior to her diagnosis....have you ever heard of this disease? 

There is no known cause and no known cure for Biliary Atresia.  This Super Papi is going to make a difference in educating others...and he is doing it his way...through his love of Star Wars.  I love this father's vision and his mission. 

Let me let Jason explain his vision in his own words:

First, I want to say thank you, to Ana, for letting me take over her blog for one day. I'm not much of a writer, so I'm a little nervous. 

My name is Jason.  I'm a son, a brother, a husband, a best-friend, a bit of an artist, a Peter Pan, a self-proclaimed GEEK, but most importantly, I'm a dad.

I'm not really a blogger, or at least I never meant to be.  I started my blog to keep myself on track and show progress of a project that is very personal and important to me, not to mention, really, REALLY fun.

My son, Denim Wayne, was born with Biliary Atresia. To put it simply, he was born without a gall bladder, or the bile ducts from his liver to his large intestine. At a month old, he had major surgery, at 2 months, we were still wondering how things were going to turn out. At almost 18 months, you'd never know there was anything wrong with him.  We chalk this up to all the love he has received, and more importantly, to the power of the prayers people made on his behalf. But, as well as he is doing, things can change very quickly.

My son being born with this horrible condition made me decide to outwardly support the first causes I've ever really cared about. I want to raise awareness of pediatric liver disease, and encourage organ donation.  But I didn't want to just wear a bracelet (which I do, every day "Your Liver. Your Life."), or sit at a table while people stuffed money in a basket or jar.  I just wasn't sure what I wanted to do.

I'm a huge Star Wars fan, and a few months ago, I made a Star Wars friend on Facebook. This friend was a droid like R2-D2, name R2-KT, or Katee, built in dedication of a little girl, Katie Jackson, who died of cancer. Katie's father, and the builder of this pink droid, take Katee to all kinds of events and conventions, and use her to spread the word and teach people about cancer. You can find Katee's website at If they could do it for cancer, why couldn't I do it for pediatric liver disease?

So, R2-BA, or "Bili," was born... Or at least the idea for Bili. I decided that I would also build a droid to support a cause. I decided to do this, and jumped right into it, so that I wouldn't put it off and lose interest. I'm going to build this R2 Unit, and take her, along with information on Pediatric liver diseases, and organ donation, to different sci-fi conventions, local festivals, parades, and other events. I will probably also offer to attend parties and other stuff like that to raise money for the charities.

I started a blog to keep myself motivated, and to keep track of my progress. It's title "Journey to Bili," and you can find it at . There, I go into a little more detail about Denim, and have pictures and reports on my progress. You can also donate to the Bili Build fund.

Thanks again to everyone for all your support.

Jason, Thank You for taking your vision and going for it.  I truly believe that love can change the world and you are a testament of this.  The love for your child has driven you to raise awareness and to raise funds so that one day {in the near future I hope} a cause and a cure can be found.  Thank you for sharing your Heart, your Love and your Compassion for Others.

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