Faith's Story

Riding her bike, playing with her 10 year old brother, Kristian, and 7 year old sister, Katheryn, chasing after her dog ... and let’s not forget the lizard, are some of Faith Stan’s favorite things to do.

Faith is the four-old daughter of Stephanie and Kris Stan of Olathe, Kansas. Faith was born on March 13, 2004 with a very rare disease that few people know about. The birth defect is called large congenital melanocytic nevi, which can best be described as giant moles. The large, brown moles, which are often hairy, now cover 75 percent of her body. New moles continue to develop almost every day. Faith now has about 1,000 nevi on her legs and no white skin is visible on her back and very little white skin on her abdominal area.

When Faith was only 1 week old, she underwent surgery at Children’s Mercy Hospital in Kansas City, Missouri for a malignant melanoma, or cancerous skin tumor on her back. Moles began to appear at the age of two weeks and doctors discovered she had a lesion on her brain which is called neurocutaneous melanosis, which could lead to seizures and fluid on the brain that could prove fatal.

During her first year of life she underwent two surgeries, seven biopsies, two MRI’s and three CT scans. Since then she has had surgery on her leg and foot as well as several other medical procedures.

Because her nevi are considered pre-cancerous sites, Faith can spend almost no time in the sun. Within 15 or 20 minutes, her skin begins to burn and the area around her mouth turns white. With the inability to perspire correctly, this could lead to heat stroke. 50% of neurocutaneous melanosis patients die by age 2 and 70% expire by age 5.

The only physician in the United States who specializes in the treatment of neurocutaneous melanosis is Dr. Ashfag Marghoob, who practices at the Memorial Sloan-Kettering Hospital in New York City. Her family is forever hopeful that a cure may be found for this dreadful disease. That is the reason for this website. To educate people on this horrible disease and to raise funds for Faith’s medical treatment. The family will be traveling to New York in October for her yearly visit at the Memorial Sloan-Kettering Hospital.

You may help Faith and her family by joining us at the Benefit Event at Austin's Bar and Grill, by bidding on an item in the silent auction, or by making a donation to The Faith Hope Fund.
Any help that you can give this little girl is greatly appreciated.

Thanks so much! May God bless you all!