Anna Liberty

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

annaGear

 

Anna has XP.

Her skin can never be exposed to direct sunlight.

NEW! We’ve started a fundraiser for Anna.

sunshing for anna

Please check it out and give what you can!

 

 

On this site, you can follow our blog, read answers to common questions, or learn more about XP.

We suggest you start at the beginning: The story of Anna’s last sunburn ever. Or watch our quick video below!


Anna 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.  Here DNA can’t repair itself. About 1 person for every million in the US have XP. Basically, Anna can’t be exposed to direct sunlight. Ever.

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, Anna must wear, 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.


19 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

  13. Presistence says:

    I have paranoid schizophrenia and I have seriously strong delusion of bright places and stuff that I mostly come out during evening, night and midnight to avoid the day, I do come out during the day but mostly night but I would say with adjustment you can totally live a normal life, some of my inspiration to fight my condition comes from xp patience stories, it’s been years but I am getting the hang of it, one advice I can share is that the love from people around the patient and early detection and corrective measure to counter it is key to enjoying life. Cheers and keep at it, life is full of surprises and hope and love. You are doing great parents of Anna!

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