Today we’ve got a new book to share with you, at least it’s new on our radar – it was first published in November of last year (2017). However today it’s more than just a book review.
We’ll start with why this book has been written. Elly Gedye is the author and illustrator of Eva the Adventurer. Elly has written this book to raise awareness of Nonketotic Hyperglycinemia (NKH).
Elly’s son, Mikaere, ( or Kai) has NKH, which is a rare, terminal metabolic disorder that he has inherited from his parents Sam and Elly. Essentially, Mikaere can’t process glycine – a neurotransmitter. This causes seizures, severe developmental and learning delays and is pretty grim.They are raising money for FundNKHCure.
Last Wednesday (2nd May, 2018) was NKH Awareness Day, which is when NKH came to our attention. The drive behind the campaign was asking people to pass on their daily Starbucks and instead donate £3 to research, by texting ‘NKHC50 £3’ to 70070. You can also buy Elly’s book Eva the Adventurer which will donate to the cause, so let’s discuss the book..
Eva the Adventurer
“Eva is a bright, determined girl with a bountiful imagination. She fills each day with adventures, squeezing in as much as she can before bedtime. A trip to moon, cure a rare disease, drive a train? Absolutely. What will today bring?”.
We really enjoyed this book – it’s short and sweet – the perfect story to read before bed. It has with wonderful messages throughout.
It outlines the many adventures that children may have. For example we may look at a child playing with a rocket but in their mind they are being an astronaut. Elly has portrayed this perfectly within her book – both the words and illustrations are by herself. This book is aimed at children between 5 and 6 years old, however we think 3 & 4 year olds will throughly enjoy it it.
I found it a moving story knowing the reason why Elly has written it. Children will love it, and will probably be able to explain their own similar adventures as you read the book. We also love that Eva is breaking the stereotype, ‘The perfect read for inspiring growing minds – great for the girls-can-do-anything mentality” – a review from Mums with daughters everywhere!
You can buy the book here. And the best bit is that it’s raising money for such a good cause.
“By Elly Gedye, who hopes kids continue to adventure, even when they grow up”.
More on Supporting Children’s Charities + NKH Research
Our books support children with NonKetotic Hyperglycinemia, a rare and terminal metabolic disorder.
It’s hard to explain what NKH is like, as a parent. To watch your baby have countless seizures, miss every milestone and live an incredibly medicalised life. The pain and suffering are heartbreaking. The fear and grief can be overwhelming.
So we have our hope in a cure. Specifically a gene therapy cure. Even more specifically, a cure currently in development by Prof. Nick Greene of UCL in London, UK. We believe he is the closest to a clinical trial. The closest to giving us a future with our son.
Because NKH is so rare (less than 40 children in the UK, less than 500 worldwide) there is little to no awareness. There is little to no funding for research. So we, as parents fund what can. Through local fundraisers, and events and raffles. And children’s books.
All our books support Team Mikaere and Joseph’s Goal – a charity for children with Nonketotic Hyperglycinemia.
Thank you for helping fund a cure for our children.
I am truly moved after reading this book and speaking to Elly. We really hope that by sharing this post today we have helped to raise a little bit more awareness for this family, and other families who are dealing with NKH.