Epidermolysis Bulosa Awareness Week

My daughter, Christina, was born with a genetic skin condition called Epidermolysis Bulosa. The “grout” that we all have between the layers of our skin that allows us to absorb friction is missing in one specific layer in her skin and as a result she blisters. Particularly on her feet…which you can imagine gets alot of friction for all of us. Christina has the mildest form of EB yet for many events that cause us to walk alot, she needs a wheelchair. The Giants game, Disneyland, a big school campus. This week she’s in Washington DC with her class and…she’ll need the chair for alot of that touring. Honestly, she’s triumphant and amazing. I very rarely think of her as disabled. She’ll live a relatively normal life..so what if she’ll never snow ski.

Unfortunately, there’s a number of kids born with far more severe forms of EB. Forms that are so debilitating the child lives in almost constant pain. The level of care they receive is astonishing…bandaging their whole bodies daily in a process that takes 5 or 6 hours. Cancer is like the flu compared to the severe forms of EB and these kids rarely survive their teen years. Consequently, I always write a post at this time of year. Stanford is doing remarkable work in solving this human problem and they actually think there’s light at the end of the tunnel. For more information, please click on these links. If you feel led to give…please do.

www.ebkids.org

www.ebinfoworld.com

Thanks!

 

Comments

  1. Thanks for posting this Jim!
    The EB kids and adults need all the press they can get and your prayers too!!

Speak Your Mind

*