Anna and XP
Anna was born with Xeroderma Pigmentosum (or XP). XP is a rare genetic disease that causes her to be extremely sensitive to the damaging effects of ultraviolet radiation. Anna’s variation is XP-D.
Some mistakenly think she’s allergic to the sun, but it’s more severe then that. Daily living is a bit different for Anna and her parents. 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.
Each window of our home and car has been treated with a UV-blocking film, thanks to the generosity of 3M, Glamour Glaze, and the XP Family Support Group. UV blocking plastic sheets are used to cover her stroller and windows at places such as Church and other family members’ homes.
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.
We begin our blog with the story of Anna’s last sunburn….
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.