Facing off vs XP

On March 1, 2018 my cousin Norah at the age of 2 was diagnosed with Xeroderma pigmentosum (XP). XP is a genetic disorder in which there is a decreased ability to repair DNA damage such as that caused by ultraviolet (UV) light. Symptoms may include a severe sunburn after only a few minutes in the sun, nervous system problems, such as hearing loss, poor coordination, loss of intellectual function, and seizures. Complications include a high risk of skin cancer, with about half having skin cancer by age 10 without preventive efforts, and cataracts. The risk of other cancers such as brain cancers also occurs.

There is no cure for XP. Treatment involves completely avoiding the sun. This includes protective clothing and sunscreen during the day (even when inside) and dark sunglasses, protective hoods, gloves and other protective gear when remaining indoors is not an option. Even on rainy days Nora is at risk! Protective film on windows, light meters and other precautions are taken all day, every day.

The past year has been a challenging one for Nora and our family but she is “Norah Strong”. Norah loves Ice hockey, gymnastics, her family and is like every other adorable 3 year old but she needs our help. Because XP is such a rare disease effecting only 1 in 1,000,000 people in the United States XP Awareness is important so that more research into treatments can be found. The care and treatment of XP is costly and time consuming. Follow Norah’s journey here: NorahStrong or at facingoff.vs.XP

**This is why I am “Facing Off Versus XP”. Every faceoff I WIN this season will be a chance to raise money for Norah and her family. If you wish to sponsor me in these efforts please pledge now. Every bit helps. **