Help Dakota with medical travel expenses

My son, Dakota, is 12 years old, and is going into the 8th grade at Manteo Middle School. He’s one of the kindest and most thoughtful people I know. He is a nurturing, caring kind of person. Will help anyone out. Loves animals, swimming, going to the water park, roller skating, playing with friends, riding his hoverboard, playing board games, playing cards, painting, writing stories, anything Harry Potter, and of course his Xbox. He is definitely an old soul.

What most people do not know, and some did not know until recently, is he suffers from Long COVID. Most people have not heard of it, or, if they have, they do not believe it is true. Well, my son is living proof it is a real thing and does in fact exist. If I was not living it, I would not believe it myself.

Dakota’s Long COVID battle began in January 2021 when he got the first infection. It all started with his heart not sounding “right” to his pediatrician. So, we were sent to a cardiologist, as well as other specialists, at Children’s Hospital of Kings Daughters in Norfolk, VA. And that is where our nightmare started.

From the heart issue, things progressed to fatigue, migraines, dizziness, anxiety, and depression. And if that was not bad enough, his brain signals to his legs would abruptly stop and he would fall right where he stood. When that happened, I became his legs. I would have to pick him up, he would wrap his arms around my neck, and I would tote him to the closest thing I could get him to whether it be a chair, the couch, or the bed. He had absolutely no control over his legs, and his feet would drag as I was getting him to the closest thing to sit him on. I am not a very tall person standing at 5 feet tall, and Dakota was almost as tall as I am when all of this started. So, getting him anywhere in the house by myself was very challenging.

We named these instances “episodes”, and they are nothing less than debilitating for him. Some days he cannot even get out of bed, and, if he does, sometimes he is crawling on the floor to just get to the bathroom. He now has to rely on a wheelchair on some days. Some days I am putting him in a chair to sit at the bathroom sink just so he can wash his face and brush his teeth. Simple things like that now can be a chore for him.

He contracted COVID again for the second time in February 2023, and the episodes not only persisted, but got worse than they already were and increasing from every few days to every day multiple times a day. We had just got use to him having the episodes, and now they were increasing and getting scarier by the day.

Fast forward a few months to April 2023. Dakota had pink eye for 17 DAYS, yes 17 days! We were at the urgent care every week getting new medicine. He was washing his hands and being careful like he was suppose to. I was washing the bedding every day like I was suppose to. We did everything we were suppose to do, and it just would not go away. Then on Monday, May 1, 2023, it FINALLY stopped, and the virus was gone. Come to find out, pink eye is a symptom of the new variant of COVID. Who would have thought something like pink eye was a symptom of COVID?? Not me. It never crossed my mind that it could have anything to do with COVID. So now he has had COVID a total of 3 times.

And then, little did I know our lives were getting ready to drastically change, and not for the better. . .

On Wednesday, May 3, 2023, everything seemed to be going great. We had gone to Children’s Hospital of Kings Daughters in Norfolk, VA to see his neurologist for a check-up, and come straight back home. Road trips like that take a toll on him, so they’re never filled with doing anything fun or going sightseeing. There was a traffic jam on the bypass so I hopped onto the beach road to get around it, and as I’m heading back to get onto the bypass he screamed as loudly as he could (which you have to understand is not what you would think when someone uses the description “loudly” because it was anything but loud) MOM and I look over and he is literally sliding/falling out of the seat, eyes almost completely shut, he’s trying to talk to me but his words are so slurred I could not make out what he was saying, and his body is just going completely limp. The fear that went over me I will never be able to put into words. So, I put on my hazards and headed to the ER. Just as quickly as this “episode” started, it was over within minutes. He came out of it, said he was okay. This "episode" came exactly 2 days after the pink eye was resolved.

Between May 3 – May 9, 2023, he had a total of 13 of what we now call the “new episodes”, and they were just getting more and more frequent. He was admitted to Children’s Hospital of Kings Daughter on May 9 and when he was discharged, he was diagnosed with Non-Epileptic Seizures on top of everything else he had been suffering from up to that point. Since the “new episodes” started, I have to pick him up like a dead weight. He can no longer try to at least help me get him up off the floor. His body is just completely limp. So now when I pick him up, I have to maneuver him so I can get him on my back to tote him to the closest thing I can lay him down on. While I am still standing a mere 5 feet tall, Dakota has grown, and is taller than me now. So getting him off the floor and to a spot, is getting even more tricky and harder than it was before.

COVID has stolen my child’s childhood from him. It has stolen a life that he should be able to have. It has stolen his ability to do anything a “normal” child can and could do. Completely out of the blue my child’s life has been turned upside down. You never know from day to day whether or not it is going to be a good day or a bad day. You never know when the “episodes” are going to come on. You have no warning, no nothing. He can no longer do all of the things he loves because he has a great risk of it knocking him down for a day or sometimes days at a time due to the fatigue from it all.

I have been battling this alone ever since it started in January 2021. It is just me picking him up off the floor, getting him to somewhere he can sit or lay down when he has an episode. It is just me that has went to all of the doctor’s appointments with him. It has been just me living through and experiencing this right along with him, right by his side. It has been just me throughout the entire process. I have had to leave him at home alone not knowing if I was going to come home with him having hit his head or worse because he has fallen. I have reached out to every organization locally and done everything I could think of and come across for help, including a sit in nurse but because these episodes have no set out schedule he does not qualify for that service. And just like everything else, he does not qualify. Simply put – I work hard to take care of my family like I have done on my own for the last 23 years, so he does not qualify for assistance of any kind. I have bulldozed through and fired the former governor of Virginia who was his neurologist after his complete and utter lack of care and concern when the new episodes started. I have bulldozed through and won against his insurance company to get to him adequate care and treatment for his new “normal”. And as of very recently I won an appeal I filed against them to get Dakota to the Pediatric COVID Clinic at Children’s National Hospital in D.C., which is one of only a handful in the world that treat pediatric patients with Long COVID.

He tries so hard to not make it any harder on me than it already is, but seeing your child like that, that helpless, is devastating. All you ever want to do is to protect your children. Give them the best life that you can give them. And I have had to watch my child go from having a normal, great childhood, to a childhood that is basically nonexistent. The fear I have been living as a parent since it all started, I cannot put into words to describe it to anyone. I cannot put into words what our new “normal” life is like. You simply have to live it or see it to understand a fraction of what we are going through.

Dakota’s appointment at the COVID clinic in D.C. is July 19, 2023, and we will be gone a total of 5 days. He is going to have to have time to rest from traveling to get to D.C. and time to rest after his appointment, so 2 days of the trip are going to be centered around that. I am asking for your assistance with his travel expenses for the upcoming D.C. trip. I am not one to ask for help, so doing something like this is not easy for me and not being done lightly.

We would greatly appreciate any assistance, no matter how small, you can provide, as well as any prayers and/or positive vibes you can send our way. We need all of those we can get.

Thank you for taking the time to read our journey. Feel free to reach out to me if you have any questions. I will be happy to talk to you about our new “norm”, and tell you more about Dakota’s story.