Delizah our Midnight Sun Princess

Sheila Woody Herrera is organizing this fundraiser.

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My Daughter Courtney’s lil girl Delizah is 12 years old and lives in Riverside County, Southern California. She loves Unicorns, Brats dolls, anything Disney and the color Pink. She is always happy and loves to play with her sister and brothers but when they go outside she now has to watch them from the window. Delizah has Xeroderma Pigmentosum. (Xeroderma pigmentosum (XP) is a rare autosomal recessive genetic disorder of DNA repair in which the ability to repair damage caused by ultraviolet (UV) light is deficient. Until recently she was misdiagnosed which has caused irreversible damage. The morning after Christmas 2017 she seemed very lethargic (she had been playing normally the day and evening before) her mom took her to urgent care where the Doctor said take her to the local hospital, after hours of testing and no answers as to why she was taken by ambulance to Rady’s Children’s Hospital in San Diego, where it was determined (as suspected by Urgent Care Dr.) that she had a corneal ulcer in her left eye. After being many tests, scans and being hospitalized for 5 days, Delizah was released. Several weeks ago after extensive research her mom found what she felt was the answer so she called Delizah’s primary Doctor who then confirmed the devastating diagnoses of Xeroderma Pigmentosum. This week Doctors confirmed several spots of cancer (types to be determined after biopsies). Due to the Xeroderma Pigmentosum and her age the Doctors feel it is necessary to put her under general anesthesia to do surgery. Prior to surgery she must see a plastic surgeon to see what the best route for minimal scarring on her face will be. Surgery will be approximately in 6-8 weeks. They want to try and remove the cancer, send for testing and biopsy all questionable areas (there are quite a few). After surgery she will undergo topical chemotherapy for a yet to be determined time. The chances of her having future surgeries is great to say the least.

Delizah has suffered irreversible neurological damage as well. As happy and cheerful as she is each and every day, she has diminished mental capacity and is as we like to say “clumsy”, she lacks the coordination that other children have. Every effort must be made to keep her protected and in order to make her life safer and more comfortable everyday events must change. She must be 100% protected at all time from the sun and UV rays, which means protective clothing (head to toe), windows in car and home must be tinted to prevent UV rays from coming through the windows, lighting must change to insure she is not exposed indoors, continuous follow up appts which some are more than 1 ½ hours away….so many other items, too much to mention.

Please feel free to view the below site to help you understand Delizah’s rare genetic disorder.

https://rarediseases.org/rare-diseases/xeroderma-pigmentosum

https://www.cc.nih.gov/ccc/patient_education/pepubs/xp7_17.pdf