Epidermolysis Bullosa (EB) and Raegan Liebl

gvn2fly1421gvn2fly1421 Posts: 347
edited April 16 in ACTS
I am embarrassed to say that I have never heard of EB until yesterday at church, even though Eddie and Jill have co-founded a research partnership.  My wife and I lead small groups for 4th and 5th graders and one of her girls, Raegan Liebl, has EB.  We just learned about this although she has been with her for going on a year now.  She keeps it quiet and has been really strong in that she never lets her mom know she is in pain. 

Raegan is getting to spend a week in Disney, Universal, Legoland, etc coming up for Make a Wish and she is really excited.  I asked her mother what we could do for her and she said she has been wanting to get postcards from "all over the world".  I brought up possibly funding a trip to a place she wanted to visit or reaching out to singers she liked, but she said postcards would be good.   I was hoping I could get some help from my friends here and maybe you take a little time to send her a postcard and give her some words of encouragement from wherever you are.   She has been into Harry Potter lately so wouldn't it be awesome to flood her house with postcards similar to the way Hogwarts flooded the Dursleys?


Here is her facebook page if you would like to follow along on her journey:  https://www.facebook.com/raebigworld/

If you would like to send her a postcard, message me (or the facebook page) and I (or her mom) will send you her address.

When her mother brought up the postcard thing, I only knew of one place to post it where I could potentially reach an audience "around the world" and the surprise and embarrassment on my face when I came here and saw all the EB posts.   When I come to pearljam.com, ACTS is not a place I typically come and for that, I am ashamed.  Needless to say, my wife and I's heads are out of the sand regarding EB and we would like to do whatever we can to help.

If you have any questions, please let me know and I appreciate you taking the time to read this.
Post edited by gvn2fly1421 on

Comments

  • gvn2fly1421gvn2fly1421 Posts: 347
    edited April 23
    Alright, first person to send me a picture of the postcard they are going to send plus their address will get an unopened pack of Eddie Vedder playing cards like the ones pictured below...  And when I said "world", anywhere in the US is awesome too!   GONE!

    Post edited by gvn2fly1421 on
  • VikkivaleVikkivale Los Angeles, CAPosts: 142
    Thanks for posting about this @gvn2fly1421!  I hope that Raegan gets lots of postcards to brighten up her day!  To keep the generosity going, I want to offer up something too.

    The first two people who send me a private message with a photo of the postcard they are sending to Raegan will get two stickers:  TOTD and Doheny (I have 2 sets available).  I will mail anywhere in the world.

  • lastexitlondonlastexitlondon Posts: 2,499
    I would love those stickers as i do not own them. 
    brixton 93
    astoria 06
    albany 06
    hartford 06
    reading 06
    barcelona 06
    paris 06
    wembley 07
    dusseldorf 07
    nijmegen 07

    this song is meant to be called i got shit,itshould be called i got shit tickets-hartford 06 -
  • VikkivaleVikkivale Los Angeles, CAPosts: 142
    I would love those stickers as i do not own them. 
    Sent u a pm
  • VikkivaleVikkivale Los Angeles, CAPosts: 142
    Vikkivale said:
    Thanks for posting about this @gvn2fly1421!  I hope that Raegan gets lots of postcards to brighten up her day!  To keep the generosity going, I want to offer up something too.

    The first two people who send me a private message with a photo of the postcard they are sending to Raegan will get two stickers:  TOTD and Doheny (I have 2 sets available).  I will mail anywhere in the world.

    One more set of stickers left.  
  • gvn2fly1421gvn2fly1421 Posts: 347
    So awesome @Vikkivale!!!!  And @lastexitlondon, many thanks!  Raegan will be really excited!
  • lastexitlondonlastexitlondon Posts: 2,499
    I will send it in an envelope so i can add a photo also of us.
    brixton 93
    astoria 06
    albany 06
    hartford 06
    reading 06
    barcelona 06
    paris 06
    wembley 07
    dusseldorf 07
    nijmegen 07

    this song is meant to be called i got shit,itshould be called i got shit tickets-hartford 06 -
  • BLACK35BLACK35 Hanover, Ontario Posts: 20,036
    Going to look for a post card today to send
    2005 - London
    2009 - Toronto
    2010 - Buffalo
    2011 - Toronto 1&2
    2013 - London, Pittsburgh, Buffalo
    2014 - Cincinnati, St. Louis, Detroit
    2016 - Ft. Lauderdale, Miami, Ottawa, Toronto 1
  • gvn2fly1421gvn2fly1421 Posts: 347
    BLACK35 said:
    Going to look for a post card today to send
    So awesome!  Thank you so much!
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