Anna Liberty

A girl who's one-in-a-million

Welcome to Anna Liberty’s Website and Blog

annaGearAnna Liberty is an adorable little girl with a very rare disease.She was born with Xeroderma Pigmentosum (or XP),  a genetic disease that causes her to be extremely sensitive to the damaging effects of ultraviolet radiation. About 1 person for every million in the US have XP. Basically, Anna can’t be in the sunlight, or she will develop skin cancer.Daily living is a bit different for Anna.  Each day, Anna’s skin is covered with sunblock and lotions. She must remain indoors to be completely safe. Before going outdoors on occasion, Anna must wear shoes, long pants, long sleeved shirts, gloves, sunglasses, and a custom made hat with a specialty UV-blocking plastic face shield.

You’ll understand better after reading these answers to the common questions.

Because Anna was diagnosed early, if she continues to not show neurological symptoms, and takes all the precautionary measures to avoid exposure to UV light, she will defy the odds and live a long, happy life.

Follow our blog written mostly by me, Anna’s dad.  You can read the latest blog posts, or better yet, begin with the story of Anna’s last sunburn….


17 responses to “

  1. Patricia Powers says:

    Great blog – Anna’s lucky to have such amazing parents.

  2. Pam Powers says:

    Your Anna has the best of all protectors – you!

  3. Brad says:

    Looks great Josh. Nice job.

  4. Ann-Marie McCabe says:

    So glad you were as fortunate as we were in getting her diagnosed so young. When Caitlin had her first sunburn we didn’t know it was sunburn because she had literallly only been exposed for 5-10 minutes. She was unable to open her eyes for 3 full days because they were swollen shut. Now we go about the business of protecting her knowing we are saving her from further painful burns. Keep up the great work.

  5. Anya says:

    Best of luck and good health to your little girl (and her brothers and sisters) from Pakistan.

    Anya

  6. Shani says:

    Ohhh this is so great!!! God bless Little princess!!!

  7. Lauriann says:

    This is an extraordinary story. Your little Anna is sooooo cute and soooo lucky that she has such magnificent, wonderful, caring parents. I hope that as she grows older she can totally appreciate what a gift she has in you, and in life. Good luck to all of you, and God Bless. =D
    ~Lauriann

  8. Kittie Tenney says:

    This is really a wonderful blog!! Thank you so much for posting this and helping people understand XP. The pictures of Anna are priceless! She is such an adorable girl. So happy she is my granddaughter!! Not to mention that I am so proud of my son and daughter in law and Lizzie, too!

  9. Cambry Wallentine says:

    Fantastic little girl and parents. :) May god bless her.

  10. […] How You Know” from Disney’s ENCHANTED (Full Clip) Visit http://annaliberty.wordpress.com/annas-story/ – see about our little princess who can’t go out into the sun! Amy Adams sings Alan […]

  11. Eric Douglas says:

    Do you have an online link to donate? That would be great!!

  12. Tammy says:

    Our son Jack has xp-varient D…..our family’s thoughts and prayers are with you….she is beautiful….Tammy Zinkann

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