~Our 'Young Warrior' Evan~ Living with Harlequin Ichthyosis

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Powerful Posts

Here are a few of my favorite and most powerful posts which seem to be the most popular as well. As a person who is totally NOT a writer I think it has been good for me to practice and keep up with by updating this blog. Enjoy!



Educating the Trolls
Published on December 31, 2012




Raising Awareness for Rare Disease Day: Caring for my baby with Harlequin Ichthyosis
Published on February 23, 2012




Happy 2nd Birthday Evan
Published on June 9, 2012




My World & Ichthyosis
Published on May 1, 2012




Ichthyosis Awareness Month Week One: The Facts
Published on May 3, 2012




Ichthyosis Awareness Month Week Two: My NICU Experience
Published May 7, 2012




On My Way "UP"
Published July 13, 2012




A Day in Our Life
Published April 10, 2012




And the GRAND TOTAL is...
Published on June 22, 2012
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"....Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. Ichthyosis affects people of all ages, races and gender. The disease usually presents at birth, or within the first year, and continues to affect the patient throughout their lifetime....."
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About this blog

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This blog is dedicated to Ichthyosis Awareness as well as sharing Evan's story as we experience the challenges and triumphs while living with Harlequin Ichthyosis.
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Learn More

  • Confetti Skin, Beauty Within: Blog
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  • FIRST - Foundation for Ichthyosis & Related Skin Types
  • FIRST: Facebook
  • Rare Disease Day ® 2012
  • The Global Genes Project
  • Tune into Radio Carly
  • With faith that will move anything❤
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CLICK to LEARN MORE

About Me

My photo
De De
Mommy to an amazing little boy who makes me smile each and every day. With two degrees sitting on the back burner (Master's in Education and Bachelor's in Fashion Design) I spend my days caring for my child with Harlequin Ichthyosis. Learn more at: www.FirstSkinFoundation.org
View my complete profile

Followers

Blog Archive

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 photo evbren_zpsd55017c0.jpg CLICK HERE to read about Evan's visit with Brenna!

Popular Posts

  • Raising Awareness for Rare Disease Day 2012: Caring for my baby with Harlequin Ichthyosis
    I have had a pretty easygoing life.. I enjoyed a great childhood, had a blast with my friends in high school, loved college and studying ab...
  • Ichthyosis Awareness Month- Week Two: My NICU Experience
    I’m sure every mother of a NICU infant will say it was a very INTENSE experience. I definitely had my concerns only being 30 weeks pregnant ...
  • Happy Birthday Nelly!!!!
    We want to wish Nusrit a very  Happy Birthday !!!!! We hope you have a FABULOUS day !!! Nusrit "Nelly" Shaheen is t...
  • Rare Disease Day 2013: Rare Disorders Without Borders
    Today is Rare Disease Day . Rare Disease Day is an international day of recognition for those affected by a rare disease. It is a day to ...
  • Our MicroSilk Tub
    I find it ironic that over 3 years I will still put Evan in his blue baby tub, especially since we have an amazing, "skin healing"...
  • Our Blog's 1st Anniversary!!!!
    WOW! One whole year already!! I cannot believe how fast time flies AND that I was able to keep up with my very first blog for a year! And co...
  • Page Update- Stephanie Turner's Blog
    I have added a new link to the "Learn More" section of this blog. Stephanie is the author of the blog Lifeasusdotcom and is the F...
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