Supporting Norah's Future
Donation protected
On March 1, 2018 our sweet and happy Norah Madge went to Children's Hospital of Philadelphia (CHOP) for a routine skin check up and instead was diagnosed with an extremely rare genetic condition called Xeroderma Pigmentosum (XP for short). XP is an autosomal recessive disorder that affects roughly 1 in 1 million people, with only about 350 total cases in the United States, and is characterized by extreme sensitivity to ultraviolet (UV) light.
With Norah's diagnosis, she will need to stay indoors during hours of sunlight or will need to be covered head to toe in protective UV-proof clothing if she does go outdoors. Extreme measures need to be taken at all times by Norah's parents, including testing the light inside facilities, grocery stores, the car, the home, etc. as well as making sure she is wearing protective gloves, face mask, hat, etc. with no part of her skin exposed to sunlight. This has been a hard realization for Hannah and Johnny, and yet they remain in good spirits because of Norah's beautiful and free spirited demeanor. This little girl was born wearing a a smile, and continues to be the greatest example of bravery, joy and love in our lives.
Before Norah's recent diagnosis, the family was not aware of her condition, and in being exposed to sunlight she has already developed skin cancer in multiple locations on her face and body at the age of 2.5 years old. The road ahead will include additional surgeries and dozens of doctor appointments each month. Norah's specific diagnosis of XP-C also predisposes her to a greatly increased risk of other types of cancer such as melanoma, lung cancer, and bladder cancer. She will be screened for these regularly.
We are asking for help from family and friends who wish to give financially or in any other way. 100% of the money donated will go to Norah's medical and care expenses, including:
- Regular audiology, dermatology, ophthalmology, neurology, orthopedics, immunology, pediatric, and oncology appointments;
- Travel expenses to CHOP for many of these;
- Attendance at an oncology predisposition clinic at Penn
- Additional cancer screenings
- Window tinting on vehicles
- Protective gear and clothing
The support we receive from our family and friends continues to be the light and love that gets us through, and we are so very grateful that you are walking this journey with us.
Love,
The Markle and Ulecka Families
With Norah's diagnosis, she will need to stay indoors during hours of sunlight or will need to be covered head to toe in protective UV-proof clothing if she does go outdoors. Extreme measures need to be taken at all times by Norah's parents, including testing the light inside facilities, grocery stores, the car, the home, etc. as well as making sure she is wearing protective gloves, face mask, hat, etc. with no part of her skin exposed to sunlight. This has been a hard realization for Hannah and Johnny, and yet they remain in good spirits because of Norah's beautiful and free spirited demeanor. This little girl was born wearing a a smile, and continues to be the greatest example of bravery, joy and love in our lives.
Before Norah's recent diagnosis, the family was not aware of her condition, and in being exposed to sunlight she has already developed skin cancer in multiple locations on her face and body at the age of 2.5 years old. The road ahead will include additional surgeries and dozens of doctor appointments each month. Norah's specific diagnosis of XP-C also predisposes her to a greatly increased risk of other types of cancer such as melanoma, lung cancer, and bladder cancer. She will be screened for these regularly.
We are asking for help from family and friends who wish to give financially or in any other way. 100% of the money donated will go to Norah's medical and care expenses, including:
- Regular audiology, dermatology, ophthalmology, neurology, orthopedics, immunology, pediatric, and oncology appointments;
- Travel expenses to CHOP for many of these;
- Attendance at an oncology predisposition clinic at Penn
- Additional cancer screenings
- Window tinting on vehicles
- Protective gear and clothing
The support we receive from our family and friends continues to be the light and love that gets us through, and we are so very grateful that you are walking this journey with us.
Love,
The Markle and Ulecka Families
Organizer
Melissa Markle
Organizer
Macungie, PA
