Caleb & Company: Look, Caleb's Famous... Well, Not Really.

Sunday, February 14, 2010

Look, Caleb's Famous... Well, Not Really.

Another parent is putting together some video of kids with Ullrich so that doctors can better recognize the signs and symptoms to come to a proper diagnosis. Here's the video we put together of Caleb.

1 comment:

The Mesirows said...: I love this video! Thank you for sharing. KJ misses his bff. :); February 17, 2010 at 8:22 PM

The latest "Calebism"

12/17/11

Last weekend we were at the MDA Holiday party. He opened up the gift they gave him and it was a set of toy cars. He exclaimed, "Hot Wheels! They're so awesome 'cuz their wheels are so HOT!!!"

I can't believe I forgot to put this one on here!!! A couple of months ago we ended up in the ER with Caleb - he had the flu and just had a rough night. While we were there he saw a nurse pass by in the hallway. He stopped mid-sentence and said, "Whoa. She is so beau-tee-ful. I think I want to add her to my collection."

Don't forget to check out Calebisms Archived at the bottom of the page.

What is Ullrich Congenital Muscular Dystrophy?

In June of 2007 Caleb was diagnosed with Ullrich Congenital Muscular Dystrophy (UCMD). This is an extremely rare form of Muscular Dystrophy - to date there are only a few hundred documented cases worldwide. It is considered a slowly progressive and life-limiting form of MD.

This does not mean that hope is lost. There is new research being done for this disease, as well as many other neuromuscular disorders. In the last 4 years, Caleb's Crew has raised over $65,000 for the MDA and designated all funds to go towards research for UCMD.

Please click on the links below to find out more detailed information regarding UCMD, as well as to support the MDA and Cure CMD, two wonderful organizations.

Thank you,

Amy (aka Mommy)