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Young NF Heroes Week: Kiy’lanna

By March 13, 2023December 4th, 2023Awareness, NF1, Story of NF

The Children’s Tumor Foundation had a conversation with NF Hero Kiy’lanna, who lives with NF1, and her mother Rosanna. We discussed life as an 11-year-old and her unique journey at this tender time of life. Below is a transcript of part of that conversation.

CTF: Kiy'lanna, how old are you now?

Kiy’lanna: 11.

CTF: What grade are you in?

Kiy’lanna: Sixth grade.

CTF: Did you start at a new school this year or is it the same school you've been going to?

Kiy’lanna: New school.

Rosanna: It's a middle school. She was at the elementary school, which is K-to-fifth and then now she's in middle school. Her school district, where they sent her for her learning disabilities and stuff, is actually a great school.

CTF: Kiy’lanna, what are some of the things you like about school? What do you do at school that's fun?

Kiy’lanna: Computers. Roblox. There's a phone game called Toca Boca.

CTF: (To mom) How is Kiy'lanna doing?

Rosanna: NF1 has caused her a lot of problems. It has caused her to not be able to do certain things because she ends up getting hurt fast. For instance, a ride that she was on at a fall festival. She fell off of it and ended up spraining her arm.

CTF: I'm sorry you hurt yourself, Kiy'lanna. Are you feeling better now?

Kiy’lanna: No, I'm still hurt.

CTF: Kiy'lanna, when did you find out you have NF1? Did your mom tell you or did you go to the doctor and the doctor told you

Kiy’lanna: My mom told me.

Rosanna: She was about two when we found out she had NF1. I wasn’t sure how to take that all in at the time, but she is my hero.

CTF: What led to the diagnosis?

Rosanna: The café au lait spots. She's 12 now, so it's been almost nine years since. She had a couple of MRIs throughout her life. Nothing major. I'd say like six, if that, and two EEG scans and one CAT scan.

CTF: Do you have an NF specialist you go to see or do you just see your general doctor?

Rosanna: I actually see just her general neurologist.

CTF: Rosanna, how's it for you? How's it for you finding out that Kiy'lanna had NF1 what was that like for you?

Rosanna: That was actually surprising because I had never heard of it. I knew it was rare. But when I started learning more about it, I actually started actually starting started to meet more people with it. Then I'm like, “Wow, this really isn't rare.” It's so many people that have it and now I actually hear about it a lot more than before. I don't know if they are talking about it more for people to understand it, but I'm starting to understand myself what it really is.

Then some of it's a little heartbreaking. But she's doing well. I mean, and an instance for her, she's just more childish if I can say? She's not at the mature level of her age. She has behavioral issues and a learning disability that keeps her from learning at her age group.  She has basic ADHD prone. She has absence seizures. She has anxiety, actually like separation anxiety. I know when she was younger, I used to take her to daycare and she was always crying about it. But now the older she gets, she's starting to get like, okay, I'm leaving or my mom's leaving she'd be okay. But before I'll try it will be like, “All right, I'm going to the store. I'll be right next door to the store. Right?” She's like, “You left me. You left me.” I'm like, “What are you talking about? I'm just right next door.” She's doing a lot better now. She's getting older, so I think that's a good thing.

CTF: It's a wonderful thing. Thanks so much for speaking with me today!