Explaining to your child what Neurofibromatosis is and how to answer the questions is an enormously difficult task for parents of NF Heroes.
This is what inspired Lana Melbourne (Hanssens) to write her book "The NF Hero".
We took advantage of the opportunity to ask her what she hopes to achieve from writing this book for both her family and the wider NF community.
Q&A with lana MELBOURNE (HANSSENS)
What inspired you to write The NF Hero book?
Initially I was inspired to write this book to help my eldest daughter Jayla understand what her brother was going though. She had started to ask questions about why Fraser visited the doctor so often and what the doctors were doing to him. Like many parents of a child with NF, I spent countless hours on Google trying to search for “the answers’’ to give her. I couldn’t find a resource that helped me explain this to her, so I decided I would make one!
Once I had written the book, I then teamed up with my talented friend and illustrator Luke Harrap who really bought my words to life with his amazing artwork – including making the main character look just like my little NF Hero - even his spots are in the same place!
How has it benefited you and your family?
Fraser is about to turn 8 and is becoming more and more inquisitive about his NF as he grows. When he is feeling uncertain, he will curl up on my lap and ask me to read him the book. I know this is his little way of asking for reassurance. This book says everything that I struggle to say at times. Every parent of a child with NF carries their own pain, particularly on days when the future seems uncertain or scary. Sometimes I struggle to talk to him about the future without a lump in my throat and tears in my eyes. For my family, this book always gives us a sense of hope and positivity, even on the worst of days. It reminds us to adjust our capes, and switch superhero power mode on!
Have you been surprised by how much the book has helped others?
I am absolutely amazed by how many families this book has helped. When I wrote it, I actually only ever wanted one copy – for my own family. I wanted both of my children to know that Mum did everything she could to help them understand. I never imagined that so many families around the country would be reading this story to their kids. Its very surreal for me. I will be forever thankful to the incredible team at The Children’s Tumour Foundation for sharing my dream and ensuring that families have access to this resource.
Have there been any highlights?
Absolutely – last year during Book Week! My facebook newsfeed was full of little NF Heroes all around the country dressing up in their favourite superhero costume and taking ‘The NF Hero’ book to school or daycare!! Those proud, cheeky, smiling little faces made this book one of my greatest achievements.
I also saw a YouTube clip of a gorgeous little NF Hero called Bella. She conducted a “review” of the book, critiquing the story. Luckily for me it was a positive review and she decided she loved the book! To hear her mum asking her questions, and seeing little Bella cradle my book and talking about being an NF Hero was an unbelievably rewarding feeling.
What is your hope for the book?
My hope for ‘The NF Hero’ is that it continues to create conversations in homes and schools all around the country that removes the stigma of this condition. I want our children to be able to talk about their NF with confidence, pride, and optimism. I want them to embrace their superhero powers!!
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We'd like to thank Lana for taking the time to answer all our questions and sharing her story with the community.
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