Cayden was born with a dermoid cyst. Doctors said it would never be an issue, always cosmetic, and wouldn’t grow. Well, at age 11, we found out his knot had grown pretty big. So, Children’s Mercy was consulted. On October 2nd, 2023, my son had cranial surgery where they took his dermoid cyst off the tissue that protected the brain. He has had a titanium plate put in place since his skull was too old to grow back.

Shortly after this surgery, he started to have really bad outbursts. Around Christmas Eve 2024, he went into mutism and would do the opposite of what you wanted him to do, or repeat what you say, or sleep a lot. He was then diagnosed with a rare illness called catatonia. Catatonia can cause premature death or even death because it attacks the nervous system and shuts things down. He stops eating, drinking, and going to the bathroom. His brain cells, I don’t know what happens, but he loses memory and has staring spells with silent seizures. What defeats me is that since his illness is so rare, doctors say the case is so unique. There’s not enough research, no cure, and no way to keep it from coming back. I’m just devastated to see him struggling again. And I’m terrified one of these times, what if he doesn’t come out of it? Getting catatonia on repeat can be very fatal, and I’m praying to God for him to make a way. But I’m still doing research. I don’t even know where to begin, but I want to save my son’s life before it’s too late. I need more answers than I can get in Kansas. Watching him struggle once again is so defeating, and I want to get answers and him to be healed.

He also struggles with a KLS rare disorder that is also like catatonia. The doctor thinks the last two episodes he is having are KLS instead of catatonia. My son was inpatient again after being in the hospital for a whole month in October of this year. This time, my daughter and I caught it sooner. He was inpatient at the beginning of November; we had only been out of the hospital for almost 2 weeks. Now we have been here for another month. I thought he was getting better and was back to being coherent, but then on November 15th, 2025, I watched him go back into an episode. He had just stopped talking, went back to mutism, staring spells, and won’t eat or drink. I have so many family members and friends that can tell anyone Cayden has not been the same since he’s had surgery.

They haven’t figured out how to get him to come out of his Kleine-Levin episode. With KLS, he has staring spells, sleeps a lot, doesn’t eat or drink, or go to the bathroom. I now have a newborn baby inside of a 13-year-old boy. My son had an MRI and spinal lumbar today, and I won’t know the results right away. But if they can’t get him to come out of this episode, Children’s Mercy wants to transfer him to St. Louis, MO, to another hospital. But to travel with my car, I’m worried about my tires and oil change. I’ve been looking at sorts of supports up in St. Louis, MO, for places to stay. I’m just so embarrassed to even ask for help. But I am severely behind on bills from missing work because I’ve been up in Kansas City, MO, for so long. So if we do end up going to St. Louis, MO, I’m scared that we are not going to have enough money to be able to even afford going up there. This is just shattering my heart. All I want is just my little young man Cayden back to me and my family.