EB Awareness Week 2009

ebchild

Sorry folks, I realize that lots of you are here for the 80th week of the Funky Foto Contest but I’m putting it off until next week. Instead I decided to talk about a subject near and dear to my heart…that of the disease called Epidermolysis Bullosa…or EB. The reason being that this week is International EB Awareness Week and I really want to draw attention to that fact. You see the thing is my daughter Christina has this condition…albeit the mildest form, yet I can assure you that our awareness is certainly up. I wrote a post last year on this date telling her story a bit and oh, by the way…that’s the little kooks picture down below. EB is a condition in which the proteins we all have that allows us to absorb friction somehow went missing in the genetic makeup of these kids. As a result, they blister…sometimes alot. As I said earlier, some kids have it more severely than others. Christina, in the mildest form, will most likely need a wheelchair for anything that would entail lots of walking throughout her life. Places like large school campuses, or the airport, or the mall…or Disneyland would really be impossible for her to navigate on foot because the friction that we all take for granted would render her incapable of walking in those places.

Please, please don’t get me wrong! We’re incredibly blessed! Christina is an amazing kid! She’s triumphantpeen. It would be impossible to describe the multitude of lessons I’ve learned because of her patience and courage…and what an attitude! Pistol is the best word to describe her.

Here’s the thing…there’s a ton of kids that have more severe forms of EB. The photo above is of one of those kids. Honestly, when I went in search of a photo for this post, and found this precious child above, I typed in “photos of Epidermolysis Bullosa” into Google. The photo above is one of the milder ones…by far. (see for yourself) The kids with Recessive Dystrophic and Junctional EB are absolutely devastating to behold. I really believe there is no condtion or disease in life that’s worse than this…and I’m honestly not even coming close to exaggeration. Thus…this annual awareness post. Please click on the following links and please consider donating to the ongoing research, lots of which is going on just down the road at Stanford, to rid the world of this condition and bring hope to many many families worldwide. Thanks for reading this and thanks for your help! Here’s the links: 

 http://www.ebinfoworld.com/

http://www.debra.org/        http://www.ebkids.org/

Comments

  1. Precious Christina may have the mildest form but it’s not “mild” to have blisters covering the bottom and sides of your feet, her hands, under her arms, the back of her neck, behind her knees, or wherever she took a little too much friction. It is only recently she is regularly sleeping through the night instead of waking in pain. It is the reality of EB. Yet, as Jim said we are always aware of the severity of the worse forms- where there are more blisters than skin and the blisters are internal, also. Progress is being made toward a cure- most recently at the University of Minnesota- which we are watching closely. So during this awareness week- we thank you for your time to read Jims post and we reach out with gentle hugs to all those children and adults with EB , and to those who love and care for them. Bessings, Lesley(Christina’s mom)

  2. Lesley and Jim,
    You are truly blessed to have Christina and Elena in your family. (can’t believe they are so grown up now) And you have been such an inspiration to me. Continued prayers for you and for the cure for EB!

  3. Hi Lesley and Jim,

    What struck me when I read Lesley’s email was how blessed Christina is to have you two as parents. I know all children are gifts from God but I also know how much sacrifice,time,grief, pain, love, effort, energy etc etc goes into raising a child with a disability or special needs. And many times the children don’t realize the extent of all a parent does but God knows. EB is horrible but thankfully we have heaven to look forward to free of pain and disease. Lots of Love Dianette

  4. Marie-Anne says:

    Dear Lesley and Jim,

    Thank you for this blog explaining about what is EB. I’m wondering how you were doing when Christina was a baby in diapers. Hermione had a very sensitive skin and was prone to diaper rash; what it must have been with Christina!
    I’m happy to know she can walk in your home.

    Hey! I was wondering for what cause we could dedicate the money for the garage sale in the community group: what about EB research?

    Sincerely yours, Marie-Anne

  5. Ellie Madsen says:

    Thank you for the constant information and up-dates on EB.

    There are so many of us that are unaware of this disability
    and how devastating it is to deal with. The data you pass
    on is appreciated.

    Christina is a very special girl, with a very special family.

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