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KatieCakes Member Posts: 117 |
posted October 08, 2003 12:39 AM
   
I know this isn't Ichthyosis related but it is related to skin disorders and is relevant to anyone who is involved with Camp Discovery. In the past 3 days two campers both living with a terminal skin disorder callled REB or Recessive Dystrophic Epidermylosis Bullosa(characterized by blisters inside and outside of the body and usually being confined to a wheelchair with little or no joint mobility and no having no fingers because they are fused to the hand) have passed away. I cannot begin to describe the loss we have suffered and the pain that I feel. Both Brittany and Micheal were beautiful butterfly children(as children with EB are called). They provided a light to myself and all those at camp that can only have been a gift from God. I am so glad they aren't in pain anymore and that they both get to run free together without wheelchairs and without pain. But I miss them more than words can describe. I feel so lucky to have been blessed with Ichthyosis..yes I said Blessed because I don't have any pain except for a few very small occasions and I can run and walk and I have a full life ahead of me. That cannot be said Of Britt and Micheal. They experienced pain everday of their lives and yet they had the most amazing attitudes. They were the bravest people I know. And I think that no matter how many startes I've gotten or how many rude comments I will always consider myself lucky because I feel so guilty that they had to go through the pain that they did. I would have taken every ounce of it from them if I could have. We all have a purpose in life and Ichthyosis is a part of that..we didn't get it by accident and we are all beautiful. Camp is the best thing thats ever happened to me and so are Britt and Micheal. Please keep their families in your prayers. Katie IP: Logged |
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Alyssa Member Posts: 16 |
posted October 08, 2003 11:08 AM
Katie - my heart goes out to you over your loss. I myself do not have ichthyosis, but am a member of this site for my mother who has EHK. Your expressed words proves even more so that God has knowingly given your friends, you and my mother the largest of hearts, strength and compassion. These are the best gifts, because they can be shared with the rest of the world that really isn't as fortunate as all of you to have them. God bless you all. -Alyssa IP: Logged |
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Veronique Member Posts: 24 |
posted November 02, 2003 07:59 AM
I am very sorry to hear about your losses. A year ago I was in the suopermarket with my daugthers (one of which has EHK) when I asked a fellow mom if she hadn't been pregnant last time I saw her. She told me that indeed she had been, but her son only lived for three days, having a severe case of EB. I felt so bad having been so blunt. (as a matter of fact it has been over a year now and I still feel bad about it) It especcially hit me because Karlijn was originally diagnosed EB (only for a very short time, the second day another dermatologist diagnosed her to have Ichthyosis, probably EHK, which has been confirmed by now). I am very greatfull indeed we are only dealing with EHK. And sometimes I even feel guilty to all other parents and children we met when we were in hospital who have to deal with much worse situations. IP: Logged |
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