The NF Hero

CTF is very excited to announce the publication of a wonderful book by community member Lana Hanssens. The NF Hero was an idea Lana brought to us a while back and it has finally come to fruition. This beautifully written and illustrated 20-page book tells the story of Alex who has NF, as well as several superpowers!

Preorder your copy of the book here, or download a free PDF.


Interview with Lana

Can you tell us a little about who you are?
I have a son, Fraser, who has NF1. Finding out about his diagnosis was a process that took a couple of years as he developed more of the signs. During that time, we saw lots of doctors and specialists. Fraser has a sister, Jayla, who is 4 years older than him, so understandably, she was curious to know why he was being so closely looked at by all these doctors.

Where did the inspiration for your book come from?
When we found out Fraser had NF, I began looking for a children’s book to help Jayla understand a bit more about what was happening. When I could not find one, I decided to write it myself. The book is beautifully illustrated by a local young artist who used Fraser as his inspiration for the main character, Alex.  

How does it feel seeing it printed?
It was quite emotional seeing it in print. It was a lovely feeling seeing what was just an idea in my head come to realisation. Knowing the book can now be shared with other young people and families is truly wonderful. I am also excited that the sale of the book will help CTF to continue doing the work it does for the NF community.  

What do you hope others will get from your book?
As a teacher, I look to books as a wonderful way to open up conversations. I hope that others will share the book with their children and speak about NF openly. I do not want Fraser’s NF to be a taboo subject. I hope this book will help make all the NF Heroes out there more willing to share their story.  

One of our own NF Heroes, four-year-old Bella, shares her thoughts on the book: