The Children’s Tumor Foundation had a conversation with NF Hero Jayshaun who lives with NF1, and his mother, Sheri. Jayshaun and Sheri recently published a book together about living with NF. Below is a transcript of that conversation.
CTF: Can you tell us a little about yourselves, and about your book?
Sheri Simmons: We wrote a book last year about Jayshaun’s struggles with neurofibromatosis. Mostly to raise awareness of the disorder, because a lot of people don’t know what it is. So, we wanted to write the book to explain what it is and how he feels. He can do everything like a regular child.
CTF: Jayshaun, can you tell us a little bit about the book from your perspective too?
Jayshaun: It’s about disability awareness, about people being mean, and bullying and stuff.
CTF: How do you describe NF when your friends ask you? What do you say?
Jayshaun: I say it’s like a bump that goes on your body, like everywhere around your body.
CTF: It’s amazing that you and your mom wrote a book. It’s really incredible and I’ve been excited to meet you and read more about it. (To Sheri) how old was Jayshaun when you learned he had NF1?
Sheri Simmons: When he was born. They told me because of the spots. He was born with all the spots.
CTF: If you had to describe NF in three words, what would those words be?
Jayshaun: Painful, painful and painful.
Sheri Simmons: I would say a unique medical experience. Every day is different. You just never know what’s going to happen or what to expect. So every day is just like some type of medical adventure.
CTF: Have there been a lot of adventures for you guys throughout the years?
Sheri Simmons: Yes. He’s had three surgeries. He misses a lot of school. But even though the doctors tell you that people with NF1 have learning disabilities, he’s actually ahead of the class. He’s always been ahead of the class. So that’s one thing I want to share.
CTF: And he recently wrote a book!
Sheri Simmons: Jayshaun is encouraging others through his newly published book “I Am Special Yes I Am.” The book is all about disability awareness and his struggles with NF.
CTF: Jayshaun, do you think you could read a little bit of your book to me?
Jayshaun (reading): “My name is Jayshaun. On April 16th, 2013, I was diagnosed with neurofibromatosis. It’s not easy to say why. Well, it’s not easy for me to live with, see people make fun of me all the time. Kids my age, teenagers, and even some grown-ups have said some mean things to me. Mean hurtful things to me and my mom, because people call me bighead a lot and it hurts so bad. But my mom says to ignore the people who say mean things and love the people who love me.”
CTF: Thank you, Jayshaun. And Sheri, is this the first book you have worked on?
Sheri Simmons: I write different types of self-help books about healing and forgiveness and stuff like that. So those are the types of books that I write about. I wrote a memoir about my life. and I’m just all about trying to help people grow and transform and be the best version of themselves.
CTF: That’s very inspiring.
Sheri Simmons: Thank you.
CTF: Sheri and Jayshaun, thank you so much for talking with me and taking the time out to just have a quick call. And congratulations on your book and everything that you’re doing.
Sheri Simmons: Thank you.
Jayshaun: Thank you.
