NORAH’S STORY
On March 1, 2018 our sweet and happy Norah Madge when to Children’s Hospital of Philadelphia for a routine dermatology appointment. Upon examining her skin, her dermatologist immediately called in a genetics doctor. Four hours later, Norah was diagnosed with an extremely rare genetic condition called Xeroderma Pigmentosum(XP). XP is an autosomal recessive disorder that affects 1 in 1 million people, with only 350 cases in the United States.  XP is characterized by extreme sensitivity to ultraviolet(UV) light. 
With Norah’s diagnosis, she will need to stay indoors during daylight. If she needs to go outside, she must be covered head to toe in layers of UV protectant clothing, and a special face shield. She is covered in sunscreen every 3 hours. Extreme measures must be taken at all times. We use a UV meter to test light inside all facilities, cars and homes that Norah must enter. This has been a hard realization for our family but we remain in good spirits and have hope because of Norah’s beautiful and free spirited demeanor. This little girl was born wearing a smile, and continues to be the greatest example of bravery,  joy and love in our lives. 
For the first two and half years of her life,  Norah spent many days playing at the park or on the beach. Due to this  exposure to UV rays, Norah has already developed atypical moles(and one basal cell carcinoma) in multiple locations on her face and body. In April, she underwent surgery to remove 4 moles, and already had surgery again October 5th to remove 5 more spots.  Norah’s specific diagnosis of
XP-C predisposes her to an increased risk of Melanoma, Leukemia, and Lung Cancer. The road ahead will include numerous trips to CHOP for appointments with Dermatology, Oncology, Ophthalmology, Audiology, Immunology, Neurology, and Plastic Surgery.  Thank you for reading our sweet girl’s story and for joining our support system. We are #NorahStrong!

Any support is greatly appreciated and all monetary donations will be used for Norah’s UV gear, and medical expenses. We would love for you to share her story and help us spread XP awareness! ✌