Jakai Medical Journey

My name is Jakai Brown. I was born on April 26, 2018 and I have a mom and a dad and five sisters (one is my angel and she is in heaven)! I was born with congenital melanocytic nevi (CMN) and neurocutaneous melanocytosis (NCM). CMN is a rare skin condition characterized by a dark, noncancerous skin patch (nevus) that is composed of pigment-producing cells called melanocytes. My CMN are my birthmarks, and my big one is on my back, neck, and head. I also have a few smaller ones all over my body. NCM is an even rarer (and scarier) congenital syndrome where CMN cells are found within the central nervous system (brain and spine). My NCM is in my brain. Most babies born like me (with CMN and NCM) do not have serious health problems, but my life has been a little different. Over the past year or so, I have had three surgeries because my doctors at the Mayo Clinic in Rochester, Minnesota said that they needed to remove some parts of my birthmark. Sometimes birthmarks like mine can have cancer in them, so the doctors thought it would be best to remove some of the bad-looking parts. My first surgery in July 2018 went pretty well, but, let me tell you, surgery is never easy! Especially when you’re only a couple of months old, like I was. I had my second surgery on July 16, 2019 and it was even harder. Because the skin on my birthmark is fragile and difficult to stitch, my doctors had trouble getting my incisions to close properly. After a couple of days at home, I had to go back to the hospital on July 24, 2019 when my incision burst open. The doctors had to do another surgery, and it really hurt a lot! It still hurts, but I think I am getting better now. I will have to keep going to the doctor in Rochester to make sure that I’m all healed up and all of the bad-looking parts stay gone, but my family and me are praying hard that everything will be just fine! To make things even worse, I am starting to have some seizures because of my NCM. This happens sometimes in other babies and even big kids! And it’s really, really scary for my mom and me. After I got an MRI, on June 21, 2019, my other doctor (a neurologist) told my mom that I needed to start taking some really expensive medication to try and stop the seizures from happening. We are keeping an eye on it for now, but I will also have to keep going to the doctor to make sure that this doesn’t get any worse. All of this is a lot to handle! My job is to eat and to play and to grow, and all of this has really made my job a whole lot harder than it should be. My mom and my dad and my sisters are doing their best to help me, but I think they need your help, too! My doctors in Rochester are over two and a half hours away from where we live, and my appointments are starting to get closer together. And there are going to be many more of them. My mom thinks it might be good idea for us to move to Rochester, but we need help to make that happen. With my doctors’ bills, prescriptions, travel expenses, and living expenses, everything is starting to add up to where my mom and dad are having a lot of trouble. My mom says, “Trust in the Lord with all your heart, and do not lean on your own understanding.” We are praying hard In the meantime, I’m going to do my best to keep eating and playing and growing!!! #Updates as of 8/2019 after my 3rd surgery me and my family! was able to moved to Rochester, Mn where I’m receiving my medical cares. #Updates As of 11/19 I will continue to see my Neurologist for the epilepsy and a physical therapist and occupational therapist and early intervention so i can meet my goals. Love and peace to you all, Jakai