Today is RARE DISEASE DAY and here is our family's story as told by my daughter Casey. (For more information about this rare disease, https://rarediseases.org/rare-diseases/giant-congenital-melanocytic-nevus/ is a great site as well as the one that Casey mentions below.)

"My baby is 1/500,000!!!
June 2, 2014, I had this beautiful baby girl! The first thing I was asked when she was put in my arms was, “Is there any history of skin cancer in your family?”. They took tests, looking for spinabifida, and had several doctors in and out looking at my baby’s skin, all within the first 24 hours of her life. This hospital had never seen so many or such large birthmarks before! Finally, a dermatologist came in and was able to explain that this was a Giant Congenital Melanocytic Nevus. She explained that her body makes too much melanin, resulting in the birthmarks and there was a possibility of it being on the internal organs as well, but we would have to go to Ann Arbor or Grand Rapids for follow-up, but assured me that all the tests so far had come back normal. Since then, she has undergone much more testing and a few surgeries. She also has the spots on her brain, a cyst on her spine, and abnormal blood vessels in her brain. Lyra’s diagnosis is Giant Congenital Melanocytic Nevus with Neurocutaneous Melanocytosis and 7 years in, it is still constantly changing. Although there are many unknowns with this disease, Lyra is doing wonderfully and loves showing off her spots!! Her spunky attitude, zest for life, and fearlessness not only keeps us on our toes, but helps her in school, where she loves telling her friends all about her spots and how she is the most special and "realist" Lyra of them all!
"While Lyra’s story is nothing but positive, there are many others who have not been the same. With these conditions, there are several risk factors. Higher chances of skin cancer, overheating/not being able to get warm due to the different skin makeup, and mental illness from bullying are a few things that sprout from the skin condition. Signs of paralysis and hydrocephalus are just a couple things that her (and others’) doctors look for when following up on their patients. These can be life threatening and many are lost every year to cases that have developed from this.
"Today, for #rarediseaseday2022, I just wanted to share again, specifically about this condition to #spreadawareness! Feel free to share, and visit http://www.nevus.org or ask questions for more information (I welcome questions!!)! #giantcongenitalmelanocyticnevus #CMN #neurocutaneousmelanocytosis #NCM #mygirl #bebold #awareness #spottygirl #lovetheskinyourein