KCNQ2 author Krystal Givens

By KCNQ2 Cure on January 29, 2017

Jake KCNQ2


Q&A with Krystal Givens, author of: A Song for Someone Special

What a journey to write a book! How did you go about writing, illustrating, publishing and now selling A Song for Someone Special?

I always sing to my babies when they are little and I had been singing this song to Jake and my husband Nathan was listening and he said he thought it would make a great book. I thought he was silly. About a year later I was at work as a nurse and I was taking care of a patient that was angry and mean. I was trying to help him, and I received a call that Jake had another seizure due to KCNQ2 epilepsy. I don’t know if it was because it was a really emotional day, but I went in the bathroom and cried and cried.

I remember thinking that I should be at home with my son helping him. What am I doing to help him to help with research funding? It just clicked I needed to write a book and that started it. I went home and started jotting down ideas. My kids and husband helped me with ideas. I looked up Illustrators in Arizona and found Heather Moffitt’s work. Heather and I spoke and it started rolling, she was perfect. Self-publishing the book looked to be very expensive. I was trying to raise money to publish the book, but I did not want to take away money from Jake by using any of our savings.

I created a Go Fund Me account for the project. The experience was humbling experience and inspiring. We were able to raise over $5500 by 104 people in 4 months with over 550 shares on Facebook. I had never met many of the donors, but they believed in our cause and believed in this book. I’m actively trying to get into bookstore, gift shops at hospitals and other sites.  Finding the time to do so has been difficult.

Jake-kcnq2What’s been the overall reaction to A Song for Someone Special? Any comments that have especially gratified you?

Everyone has been very positive and gracious regarding the book. They love that when they open the pages Jake’s face is on each one. It’s amazing that people are buying it as a gift that will be on bookshelves in the homes of children. I love the stories of happy tears when people read the book because they can relate to the words and that it caught their attention enough to talk to their kids about special needs children.

Who do you hope will read A Song for Someone Special, and what do you hope they take away from reading this book?

I hope everyone reads the book especially families with special needs children, nieces, nephews cousins etc. and it becomes one of their favorites. I hope families that don’t have children with special needs also read the book and can maybe find the balloons on each page because Jake loves red balloons. I hope their parents can teach them to be kind to others and when they see a child with special needs they say hello and maybe talk about something that the children have in common.

How is Jake doing?

Jake is two years and two months old and he’s been doing really well. His seizures are much better controlled, down to maybe one a month.  He tolerates his therapy sessions well and does three hours a week.

How does Jake respond when you read him the book?

When I point to certain pictures in the book especially the red balloons he usually can look at that for a couple seconds. Jake has cortical visual impairment and the brighter colors seem to attract his eyes and he loves red balloons and he loves the song.

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Singing to our children – that’s something both deeply personal and also universal. Why is singing to our kids so important?

I’ve always loved singing to my kids. I’m not the best singer, not even close! Singing always seems to calm them while rocking in the rocking chair.

What happens when you sing to Jake?

When he was a baby it would calm him down. Now he smiles and looks towards me He gets excited, sometimes kicking his feet — it makes him happy![/two_third]


How did writing this book help you and your family?

This book is our family’s book! It’s something that we created together. Everyone helped me with different lines in the book and ideas for the illustrations. We are very proud of this book. It’s OUR accomplishment!

Who and what have been the greatest supports for you and your family since this diagnosis?

My husband Nathan and I make a great team and I’m so lucky he’s Jake’s dad. We have amazing kids. My older son and daughter have been a great help with Jake. Sometimes they’re the only ones that can get him to calm down. It’s not just a mother’s love, it takes a family to raise this baby. We have very supportive mothers. Jake’s Grandma and Nana, Rick, my sister and nephews and nieces always play with him and show him unconditional love. He’s included in everything we do as a family and that makes my heart happy. I don’t ever want him to be left out.

What are your hopes for the future for Jake and your family?

I hope Jake’s seizures continue to be controlled and he stays healthy and happy. I hope Jake can develop some type of independence. Whether he’s able to communicate through an augmentative device or take steps in his gate trainer. I want him to have a choice in something and for him to be able make his own decisions. This journey is measured in small milestones and we’ll be here for him every step of the way.

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If you are interested in purchasing a copy of
A Song for Someone Special
please click on the image to the left.


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