Hi, I’m Keasy! I was born October 3, 2017, in Moscow, ID. To the surprise of my mom, dad, and doctors I was born with a giant mole covering most of my back, half my tummy, my diaper area, and both my legs to my knees. I also have smaller spots that cover me from the top of my head to the bottoms of my feet. My condition is called Giant Congenital Melanocytic Nevi (GCMN). It’s very rare! Only about 1 in 500,000 kids have skin like mine! GCMN isn’t hereditary. It is caused by a cell mutation that happens by random chance early on during fetal development and there is no way to detect it prior to birth.

After I was born, I was taken by ambulance to Spokane, WA to the NICU where I was sedated for an MRI of my brain and spine. The MRI showed I have an even more rare sister condition to GCMN called Neurocutaneous Melanosis (NCM). This essentially means I have mole-like spots in my brain. Doctors estimate that less than 25% of people born with GCMN have NCM. Of that group, about half will experience neurological symptoms from the NCM that can include developmental delays, hydrocephalus (fluid on the brain), seizures, and vision issues. When I was just shy of 2 months old I began having seizures. The doctors at Seattle Children’s Hospital (SCH) tried lots of different medicines to stop the seizures but nothing worked. At 5 months old I was put on a special medical ketogenic, or keto, diet. Thanks to the diet and lots of prayers my last seizure was on February 7, 2019. I’m still on a keto diet today and I don’t have to take any seizure medications!

My doctors say that my condition puts me at high risk for developing melanoma on my skin or in my central nervous system. Even so, less than 10% of people with GMCN and NCM actually develop melanoma during their lifetime. But on December 10, 2020, following a surgery I had on November 25th to remove a growth in my giant nevus, my mom got a call saying I had melanoma. This was very scary news and we had to act fast to prevent the melanoma from spreading. On December 21st I had a second surgery to remove a large area of tissue on my bum and some lymph nodes. Thankfully, my lymph nodes came back clear, but the tissue still had some bad cells in it. So on January 8th I had a third surgery to remove more tissue – and this time the tissue margins were clear! In February I had an MRI and PET scan, and both looked great! Yay!
I have a great team of doctors that help take care of me. They include a dermatologist, an oncologist, a surgeon, and a neurologist. They all work at SCH and I visit them every three months so they can monitor me and make sure I’m staying healthy! My mom and grandma also do frequent skin and lymph node checks to look for any suspicious bumps or colors.

Besides my health challenges I’m just a normal, happy, silly, sassy 3 year-old! I love playing with my friends and cousins, riding ATVs, camping, doing arts and crafts, and playing kitchen. 

My family and I want to raise money for GCMN/NCM research! Money given to the Keasy J's Fund will go to support research being done by Dr. Miguel Reyes and his team at the Gavin Bailey Tissue Repository at Children’s Hospital of Pittsburgh. Dr. Reyes and his team are dedicated to finding a cure for GCMN/NCM. Right now there are lots of things researchers still don’t know about these disorders so supporting Dr. Reyes is important to kids like me!

Thank you for reading my story and helping to support GCMN/NCM research!