Wednesday, December 15, 2010

EB on TV!

UPDATE (again): I know I keep adding stuff but just saw this article on Payton. Read it HERE. He gets to go home on the 28th. Months earlier than expected!


UPDATE: Wow. That was amazing. If you missed it and are interested, it will show again at 1:00 am and again on 12/19 at 8:00 pm and 12/20 at 1:00 am. (Thanks, Jackie!) Some of you are asking if Payton has a blog. He has a CaringBridge site HERE and I also always have it on my right sidebar. Thanks so much for caring!


TLC will air a special documentary tonight, called "My Skin is Killing Me," which will be following Payton (on my right sidebar) who recently underwent the experimental bone marrow transplant for his EB. It will show at 8:00 pm EST. Set your DVR's!

13 comments:

Julia said...

I posted this programming information to my facebook. If all of your readers do the same just think of the exposure EB could receive . . .

Maheen said...

Yay! SO good for the EB community! I JUST got my "I Love Jonah" magnet on my car, LU-HUV it! Now I am SO excited to drive around! First example; my 2 ornery-pants kids both FI-NA-LLY fell asleep after a hellish attempt at holiday shopping. So, I just drove and drove and didn't feel bad at all since I am flashing the EB love to everyone!

bryce'smommy said...

I set the DVR right away! I also spotted my first "I Love Jonah" car magnet last night in Greensboro and just about made my husband veer off the road with my little bit of hysterics! I think I just might need to get one so I can spread the word about EB myself.

Laura said...

I'm so glad that you posted and I happened to CATCH your post! Praying for you all often!

Jackie said...

In case people miss it, it is also on at 1am tonight and then 12/19-8pm and 12/20-1am. Those times are eastern.

Malin said...

I just saw the TLC documentary and just had to look up how Payton is doing now? I came across your blog, and I wish you all the luck and happiness! /Malin

katie said...

aww he's too cute! do you know how he's doing now and does he (his mom, rather) have a blog or caringbridge?

Suzy said...

It was a great show. They are blessed that he is doing so well!!

ColoradoBound said...

so far it's not showing up on Comcast cable for the 19th or 20th.

Heather said...

Thank you for sharing about the show ~ I'm watching it right now. I've been following Jonah's story since he was a week old, and I thought I understood EB life, but until I actually saw it... Wow. My prayers continue to be with you and those working towards a cure!

Krystal said...

I already had my DVR set, having seen it and being a reader of your blog. I watched some of it late last night, quickly tearing up. Just wanted to let you know that I pray for you, Matt, and Jonah frequently. Hugs in Christ,

Melissa said...

I cried the whole way through. You can imagine what little Jonah and Peyton are feeling by reading your words, but to hear his voice when he's screaming about a bath, or see his tears when they are changing bandages - heartbreaking. We are praying for a miracle for Jonah (and Peyton).

biblemm said...

Thank you for posting about this show. I think I cried thru the entire episode and thought of your 'lil guy. I too read your blog and could tell anyone what EB is, but this put the reality into your daily life....Everytime Peyton cried when they did bandage changes my heart ached. Know that we continue to pray for a miracle for Jonah & for strength daily for you and your wonderful husband. From Northeast Pennsylvania, we wish you a Merry Christmas!!