Monday, February 20, 2012

Raquel made page 2 of the North Shore News

 This is the article link.  At the bottom of article are photos of Ren and Raqu as well as Moe.

 I'm not sure about the title.

The little girl who can shed her skin

It reminds me a little like Lisbeth Salander and her Dragon Tattoos or a snake molting in the jungle. The connotation that this might be a step in her growth is fairly miss leading, but if I'd have titled it, it would have been ridden with the appropriate gore.  Vampire soup, Blood and mayhem, Friction and trauma, A scream in the night.

Or a kitschy take on ready made headlines Happy, no lucky, The wrong genes or Mutations are us. 

Maybe not what a Sunday paper is all about.

In any case, it's a good article with lots of leg work done by Erin. 

I only wish that my brain wasn't as jumbled as some of the quotes she took from me.  I thought I was making my self clear, but I guess like in a good bathroom mirror you can make yourself look better than reality.  Once and a while walking down the street a reflection in a shop window leaves one feeling like the broad side of a bus, wondering which is more accurate.


  1. Thank you for sharing your story have a beautiful family and little Raquel is precious. My mom read the article and asked if I knew you...of course...the gentle and kind Ryan from Sutherland. Your family, writing, and fight for EB is inspiring. Raquel is blessed to have you as her dad....

    Kindest thoughts,

    Kelly French (nee Harrison)

  2. Great article! I don't think anyone can ever describe the intensity of life living with a child with EB. I think this article nailed how difficult it is on the family living with it on a daily basis. I hope and pray that our family can provide you strength to get through the hard times!! Thanks for being vulnerable with your family in helping raise awareness about this disease.

  3. Just saw the article pop up on my news alerts for EB. Fantastic piece, emailed Erin as well to let her know. Raquel is just adorable! Are you part of the Epidermolysis Bullosa Lounge on Facebook?