Following is a collage and a post that our daughter Casey made on Facebook in 2020. Since it is the best thing she’s written about Lyra’s rare disease, I am sharing it again here; then I will add a few more recent photos of my beautiful granddaughter at the end.
#rarediseaseday is February 29! Please share to raise awareness for one you love.
When my daughter was born June of 2014, I had never heard of Giant Congenital Melanocytic Nevus. When she was born with spots covering much of her body, and one so large it took up most of her back and butt and wrapped around her front, hushed tones kind of filled the room. No one had seen it before, and the first question I was asked is if anyone had skin cancer in my family. What a terrifying question for a mother to hear while holding her new baby! Before she was 24 hours old, she had an ultrasound to check her spine for Spinabifida, she was looked at by many pediatricians before finding someone who could answer what it even was, and the hospital photographer edited out my baby’s beautiful facial spots, so I had to deal with my first (of many, unfortunately), of what felt like an intentional prejudice against my baby girl.
Fast forward five and a half years, 3 surgeries, 8 MRIs, and several biopsies later, I’m much more educated, Lyra is well taken care of by the team of professionals at #CSMottsChildrensHospital, and she is doing awesome!
Along with her rare disease CMN (the outside spots), Lyra has since been diagnosed with Neurocutaneous Melanosis, which are the same birthmarks/moles that are on the outside, on her brain. She has 3 spots on her brain, which have not changed or affected her in any way. They are very carefully monitored by a neurologist and a neurosurgeon, paired with annual MRIs, as they can become very dangerous, very fast.
Our biggest worries are cancer forming in the spots, internally or externally, and changes in her brain. She also has a cyst on her spine and abnormal blood vessels throughout her brain.
I am always learning more about her #raredisease, and am forever grateful for the many groups and people I have found going through the same thing! People all over the globe (1 in every 500,000) have this rare genetic mutation. As scary as this can be, and as much as I wish my baby didn’t have to go through this, I love my girl’s spots and feel like she wouldn’t be my Lyra without them! If anyone ever had any questions, don’t hesitate to ask!! I encourage questions and love to educate and spread awareness!
So, if someone you love suffers from a rare disease, remember February 29 is the perfect day to help spread #awareness!
That is such a wonderful article Casey wrote, and explaining everything about this rare disease. Lyra is a beautiful and sweet girl, and seems to be dealing with her disease with grace, as her mom! Love and hugs~
She did do a great job of it! Lyra is indeed beautiful and sweet – and incredibly clever and artistic and sensitive…I have to brag on her a little, and will be doing that tomorrow here 🙂