Anna has XP.
Her skin can never be exposed to direct sunlight.
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!
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.
Great blog – Anna’s lucky to have such amazing parents.
Your Anna has the best of all protectors – you!
Looks great Josh. Nice job.
Thanks Brad, Pam, and Patcee. Feel free to share this blog with others.
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.
Best of luck and good health to your little girl (and her brothers and sisters) from Pakistan.
Anya
Ohhh this is so great!!! God bless Little princess!!!
I meant this blog is so great!!! Not the disease she has..
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
Thank you for your kind comments and for reading about Anna and XP.
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!
Fantastic little girl and parents. 🙂 May god bless her.
[…] How You Know” from Disney’s ENCHANTED (Full Clip) Visit https://annaliberty.wordpress.com/annas-story/ – see about our little princess who can’t go out into the sun! Amy Adams sings Alan […]
Do you have an online link to donate? That would be great!!
Thanks, Eric. We’d encourage donations to the XP Family Support Group. There is a link on the right side of the page. It links to http://xpfamilysupport.org/donate.html. Please consider donating – and a repeating donation if you can – even $5 a month, or a year, would help.
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Our son Jack has xp-varient D…..our family’s thoughts and prayers are with you….she is beautiful….Tammy Zinkann
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!
Thanks for the support! Best of luck with your struggles, too.
I just watched you on millionaire. I was so sad to see you go out so early. I hope with all the people that watch that your able to get donations so your daughter can have fun just like any other kid can. I am not sure if it will show up but I included my website link for my buisness. I sell Usborne books. This is the link. http://Www.a4170.myubam.com. One…well three books actually I thought would be kind of fun for your daughter since you said she is kind of a night owl. We have these books that have a hidden image that when you shine a light behind the large you can see it. Usborne also has dozens of activity books and great fiction and non fiction books that she would love. I hope you get your wish of getting that playground for your daughter. I know as a mom we really would do anything for our children. I hope you and your girls have a happy and safe holiday season. – krystina
Thanks, Kristina! We appreciate it. It was fun to be on the show, but pretty disappointing not to win big bucks and build that playground for Anna.
The bright side is we get to reach great people like you!
PS – How did you come to find our website?
i like it your daughter is lucky to have you
my little brother has xp too so i know what you feel
all the best
Thanks for visiting our site! I bet you are a great big sister!
thank u and i wish the best for your princess anna