We've had an XBox Kinect for about a year now and Daylon has never cared a moment that he was missing out on all the fun...until last week. This kid has developed a full on LOVE affair with Dance Central 2. Keep in mind, it's hot here in Southern California these days and his feet have just become a fester of blisters over the last 2 weeks which has kept him from walking. He doesn't really walk anyway, but lately he crawls 100% of the time. That is, until DC2 is on. He loves himself a good tune. His spastic dancing in the car has been cracking us up for months and he can get a slight peek of that here! Enjoy!!
Help with the cure
I'm giving up my birthday for PUCK! To donate towards a cure, click here!
LAUGH
About Us
- Jennifer Edling
- Lake Elsinore, CA, United States
- We're Brian and Jennifer Edling and we have 5 beautiful kids: Keira,8; Caleb,6; Violet and Sadie, 5; and Daylon who turned 3 in July. Daylon was born with a rare disease called Epidermolysis Bullosa. His specific form of EB is Junctional Herlitz. When contact is made with his skin, it blisters and peels or sometimes rips right off. Unfortunately, his form of EB also affects his soft tissues (organs, throat, mouth, eyes etc.) giving most kids with his condition less than one year to live. Thanks to modern technology, there's a new clinical trial Bone Marrow Transplant at the University of Minnesota for severe forms of EB. On June 24, 2010 Daylon became their first JEB patient to undergo transplant. We're all so excited at the prospect of Daylon's improved life! This is the story of our sweet baby Daylon, and life with EB.
7 comments:
When do you guys head for Minnesota? That was the cutest little dancer I've ever seen. Adorable!
It's interesting to see music is what gets him on his feet. We have a daughter that did not walk for a long time for different reasons, but music is what got her on her feet.
Cheryl
Absolutely LOVE a Daylon video! Will be watching for updates on your trip to MN
Praying from Waterford, MI
Kim M
Omg! He is adorable! Just started reading your blog and have fallen in love with your sweet baby!
Love his little dance moves.
~ Stacey
www.littleliamslambs.blogspot.com
Very cute! Hope all is well!!!
-stacey
Haven't heard about this little guy in a long time. Thinking of you often and hope all is well.
Linda
Post a Comment