Comments on: EB Awareness Week 2009 http://fostercityblog.com/2009/10/eb-awareness-week-2009/ Foster City Real Estate...and so much more! Wed, 08 Sep 2010 12:51:42 +0000 http://wordpress.org/?v=2.9.2 hourly 1 By: Ellie Madsen http://fostercityblog.com/2009/10/eb-awareness-week-2009/comment-page-1/#comment-21459 Ellie Madsen Fri, 06 Nov 2009 18:34:59 +0000 http://fostercityblog.com/?p=3016#comment-21459 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. 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.

]]> By: Marie-Anne http://fostercityblog.com/2009/10/eb-awareness-week-2009/comment-page-1/#comment-21280 Marie-Anne Mon, 02 Nov 2009 07:28:52 +0000 http://fostercityblog.com/?p=3016#comment-21280 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 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

]]> By: Dianette http://fostercityblog.com/2009/10/eb-awareness-week-2009/comment-page-1/#comment-21254 Dianette Sun, 01 Nov 2009 16:26:59 +0000 http://fostercityblog.com/?p=3016#comment-21254 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 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

]]> By: Lori http://fostercityblog.com/2009/10/eb-awareness-week-2009/comment-page-1/#comment-21178 Lori Sat, 31 Oct 2009 02:51:12 +0000 http://fostercityblog.com/?p=3016#comment-21178 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! 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!

]]> By: Lesley http://fostercityblog.com/2009/10/eb-awareness-week-2009/comment-page-1/#comment-21161 Lesley Fri, 30 Oct 2009 17:16:19 +0000 http://fostercityblog.com/?p=3016#comment-21161 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) 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)

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