Monday, October 25, 2010

Thanks to EB I am practically famous!

Because I have EB I have been on TV a lot of times! This is the first story about me. I was 4, and when they aired the story CNN decided to show it too. We had people calling us from all over the world. This is how I met a special friend of mine named Don Lord, he is good man who always remembers to send me a card on my birthday. Next a local paper did this story. Lots of people recognized me in the grocery store after this. I got to go down to BYU to see some guys ride a bike for Eb from here to California, they interviewed and put me on BYU TV, I already blogged about that time once. I was on the news one other time but I can't remember why. Then I was on the news for a second on channel 13 and then I got to be on a show called Good things Utah when I was in kindergarten. Last December I got to go to Denver to film a little thing for one of my favorite wound care supplies that Hollister wound care makes. Recently I was on Inside Edition. You can click here. I was not too happy that they called me a mummy but I think the show turned out pretty good. It was fun to film this one, they came and set up huge lights everywhere.

I really like to see myself on tv. It makes me feel good about myself, I think I look good.

This is where I (Zack's mom) get to jump in and say a few things. First off, reading this lets me think Zack has lots of self esteem. I kind of knew he did when he asked to be Captain Underpants for Halloween. Anyone willing to go to school in tighty whitey underpants has more than enough self esteem.

And second, when we first got Zack I searched the internet, as most new eb parents do, for some sort of hope in this scary diagnosis. Quite honestly I didn't find a lot. I found a lot of pictures of wounds, but not a lot of picture of happy eb kids. I did find one that totally made my day, it was of a little guy named Hunter on a bouncy tiger with a huge smile. I wanted so badly to know that in the future my wound cover child would find the same happiness that other kids have. I worried that he would have to live a lonely quiet life. That has absolutely not been the case. Zack lives a life full of fun and adventure and I want other EB kids and new parents to know that this is possible for their families too. This is why we have always taken up offers for Zack to spread awareness on the tv or in the paper or through events.


Sally said...

Love it! Zack you're def a cutie patootie in our eyes!!! :)...sending you tons of love from Sunny South Florida!!!

Kjar said...

I was just browsing the Internet. That attitude that you guys take is inspiring. Thanks for lifting my morning.

Linda said...

Hi Zack: I just read your update and checked out the Inside Edition article. It is so good that you get all this publicity and spread the word about EB. Someday soon I really think we will beat this disease and it will be because of you and other EB children getting out the word.
Take care. Love Leah's Nana