Staying Active With a UCD

My name is Mykah. I do have a rare condition called OTC deficiency. I’ve had it since I was about 8 or 9. That’s when I was diagnosed.

Before the diagnosis, um, I started, like, feeling really light-headed, and I was always having headaches that were swarming my head. And at first I was like, I thought it was like,  okay, maybe this is just gonna come and then go away, but it actually didn’t.

And then I finally was like, okay, let me just tell my parents and maybe, um, see if there’s anything wrong with me. Maybe I need to be on some sort of medication.

So, um, after that, um, they brought me to a doctor and we, um, I just pretty much answered all their questions, and they ran some DNA tests to see if I had the same condition as my little sister. Come to find out that I did.

I watched her grow tremendously. But she definitely has always been, like, super strong and a, like, one of the bravest people I’ve known in my whole life.

Whenever I come home from school, I make sure that if I make myself something, I’ll always make her something, too, and that if I’m thirsty, I’m like, well, she’s probably thirsty, too. So, I’m just going to offer her something to drink because she doesn’t always ask. So, I always just like, do my best, like, to put myself in her shoes.

I remember one time I had an episode at school, which is the first and only time I’ve been hospitalized. We were playing basketball, and I didn’t want to be the kid who had to sit out while everybody else was working really hard. I wanted to keep going...At a point, I was, like, walking around, talking to people, and they were like, Mykah, are you okay?... I think you need to go to the nurse.

And I could tell that, like, I was kind of wobbly. I couldn’t really stand too much on my own. My parents came. I remember sitting there and, like, kind of, like, being woozy. So whenever I went to the hospital...I told them everything that happened. One of the main things that I told them was that I wasn’t drinking a lot of water. I did have some, but definitely not enough for the amount of running that we were doing. And my doctor told me that that wasn’t good, and that I should intake a lot of water from now on, especially with me being an athlete.

Some advice I would give to a teenager, when it comes to overprotective parents—I would say reassure them that you’re growing physically and mentally. And that you are becoming more responsible and more mature.

Also, listen to everything they have to say, and make sure you, you just get as much information about your condition and ask as many questions as possible.

Some advice that I have for parents is to stay calm and really just take a deep breath in, because at some point in their life…they would eventually have to do all this stuff on their own. Just ease into the process.

If I could give advice to my younger self, it would definitely be to continue to have hope, and just not think of the worst or all the bad outcomes or possibilities.

Just know that it’s going to be okay. Your life may be different from everybody else’s, but it’s definitely going to be, definitely going to be worth it.