Thoughts for a little boy with EB

Discussion in 'Coping and Compassion' started by jnoble82, Oct 24, 2012.

  1. jnoble82

    jnoble82 Mouseketeer

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    I'm hoping this is the right place to post this. If not, please let me know and I do apologize if this isn't the right place. A little boy born near my hometown has EB. Some may ask what that is. EB is Epidermolysis Bullosa. Basically even the slightest irritation to his skin can cause blistering. He just turned 2 months old and has pretty much been in constant pain since then. His parents have 3 other kids here in the Syracuse area while their baby has been moved to the Cincinnati Children's Hospital. I'm hoping to simply help spread awareness of this disease (it is EB week Oct. 25th-Oct. 31st).

    Information on baby Easton can be found here: Baby Easton His aunts are photographers so there are a lot of pictures of this little guy. Some are a bit disturbing, just as a warning.
     
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  3. kacaju

    kacaju DIS Veteran

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    I have a friend who lost her niece to this about 15 years ago. My prayers are with this family
     
  4. mommasita

    mommasita DIS VETERAN Moderator

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    How sad. This is certainly the right place, no need to apologize.

    I will keep them all in my thoughts and prayers.:grouphug:
     
  5. jnoble82

    jnoble82 Mouseketeer

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  6. mommasita

    mommasita DIS VETERAN Moderator

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    HOW WONDERFUL!!!!!!!!!!:lovestruc

    Thank you for that update. I just read it with tears of joy for his family. I can't even imagine..
     
  7. jnoble82

    jnoble82 Mouseketeer

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    Baby Easton has been discharged!! What a wonderful Thanksgiving present for the family! He flies home on Friday with Patient AirLift Services(an amazing group). It has been a hard 3 months for this family. Easton has to go back to Ohio every 3 months for a year but at least the family can be together finally! Hopefully someday this little guy can be free of pain and maybe someday this family can experience the magic of Disney as well.

    Thank you for reading and please share! This is one of the worst diseases no one's heard of. :(
     
  8. disneygeek87

    disneygeek87 Earning My Ears

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    I just now am getting involved with the boards here and was so pleased to see that there was a thread involving the very disease I live with. I have the Simplex type of EB and therefore tend to be affected on my feet and hands but occasionally have problems elsewhere. As someone that grew up adoring Walt Disney World, I've had to spend a lot of time learning to cope with the massive amounts of walking that are a given with a trip to the World. Some day I pray there will be a cure or even a decent treatment (as there is nothing now). Until that time, I hope everyone remembers that people that look completely healthy (such as myself) may have a VERY good reason for being in an ECV or having a hard time moving quickly through the crowds. Please let that little boy and his family know that he is not alone.
     
  9. irishsymphony

    irishsymphony Earning My Ears

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    I used to chat with a lovely girl on Facebook called Rebecca Brewster.

    Some of you involved with EV may have heard of her, she did a great amount for EB awareness in Australia - we were both great fans of Home and Away.

    She had a fairly severe version but didnt let that daunt her life at all. Was such a lovely girl although Ive never personally known/met anyone with EB.
     
  10. Eoywin

    Eoywin DIS Veteran

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    One of my school friends has EB - she has three kids with EB, one who passed away as a baby.

    I never realized as a child why her skin was the way it was - she was just my friend (still is too). We went to the same school and lived in the same neighborhood so we played a lot growing up.

    Now knowing what she has gone through, both her and her kids, I tend to read up about EB.
     

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