This year we are celebrating Abby's 10th birthday! To help celebrate, we are asking you to help us by donating to Nevus Outreach. Nevus Outreach is a non-profit organization committed to helping support people with CMN and NCM. They also hold biennial conferences, bring awareness, collect data and fund research to find treatments and a cure

Our journey began on August 27, 2009. Abby was born, surprising us all with a giant birthmark and many other smaller birthmarks covering her tiny 6lb 14oz body. Abby's birthmark covers her entire torso with the exception of a small patch of skin on her chest. She also has hundreds of smaller birthmarks that cover her body from head to toe.

After her birth we learned that her condition was called giant congenital melenocytic nevus (CMN).  Birthmarks are common, but a giant birthmark is rare. It is said that 1 in 500,000 children are born with a giant nevus. Abby has also been diagnosed with NCM (neurocutaneous melenocytosis). Only 7% of children born with CMN also have NCM. NCM is the presence of congenital cutaneous nevi and melanocytes in the central nervous system. 

Abby is at a higher risk for developing malignant melanoma and having complications within her central nervous system due to the NCM. There are many people diagnosed with CMN and NCM that fight daily with ongoing seizures, hydrocephalus, and melanoma within their central nervous system that often. There is no current cure for melenoma within the central nervous system and this is a fatal diagnosis. We are very lucky that Abby is celebrating 10 years of health. We hope and pray that she will continue to celebrate many more years being a happy, healthy little girl.

Abby's diagnosis left us feeling alone and worried for her future. In 2010 we decided to attend the Nevus Outreach conference in TX. Abby was just 11 months old. At this conference we were able to find out more about the condition, meet others living with a nevus and connect with doctors that specialize in the treatment of her condition. This was a life changing experience for us. We finally had answers! We met people and doctors from all over the world and made lifelong friendships. We met her pediatric plastic surgeon, neurologist and dermatologist. We finally had the support we needed to help Abby. We were also lucky that two of the specialists were located in NY at Memorial Sloan Kettering Cancer Center, just a short drive away. 

Over the next year we decided to have the larger more noticeable birthmarks removed from her face. We traveled twice ( November and March) to Chicago, where Dr. Bauer did serial excision to remove approximately 6 birthmarks from her face. Because of the placement of her giant nevus, removal was never an option. Many children go through rounds of tissue expansion to remove the nevus. We were happy  that we did not have to make this very difficult decision. 

Since Abby's birth, she has had many MRI's, 3 surgeries and has had to travel to see doctors in Chicago and New York. We have attended 5 Nevus Outreach Conferences! These conferences have allowed us to form relationships with others living with the condition. Nevus Outreach also helps support families, holds conferences, collects data and funds research to find treatments and a cure. Please consider making a donation to help make a difference in the lives of others like Abby.

Thank you for your support!