My parents regularly attend talks at The Wesley Hospital in Brisbane on many and varied topics and the latest one was on Motor Neurone Disease (MND), with Wayne Patterson as a guest speaker. MND or ALS as it is known overseas, has no known cause, no treatment and no cure. Typically patients survive for 2 to 5 years after diagnosis. It has claimed/is claiming the lives of a few people in my own ‘village’ and I feel very strongly about raising funds for more research into this cruel disease.
Wayne Patterson was 58 when he was diagnosed with MND in 2015 and as a legacy for his future grandchildren, he is writing a series of picture books so they can hear his voice through story (his voice is affected at this point and will eventually go) and to raise much needed money for MND research. Mum and dad found Wayne’s talk poignant, at times funny (Wayne has retained his good sense of humour) and as a teacher librarian, mum was so touched by his commitment to story and to books for the very young. What a beautiful gift to leave for his future grandchildren, there could surely be nothing better than the gift of story.
All three of the books (more to come hopefully) focus on the character of ‘Fat Rabbit’ who lives on Carrot Top Island. Fat Rabbit is a graffiti style character who Wayne drew on the inside of his wardrobe when he was 15, and he has lived inside Wayne’s imagination ever since. Wayne says: Fat Rabbit is a character I created in my own childhood. He was a simple line drawing who started out on the inside of my wardrobe door at home. At his core he represents a set of family values and a warm loving presence. He lives on Carrot Top Island and in the hearts of those I leave behind. Who better to be my voice?
There is a gorgeous little plush toy version of ‘Fat Rabbit’ to accompany the books, and Chickpea is rather enamoured with the one which mum purchased for the ST AIDAN’S LIBRARY, CHICKPEA, NOT YOU. The books have finally made it to the library, but the plush toy remains in ChickPea’s bed for the moment!
It occurred to me the other day that the set of three books and the plush toy would make the perfect Easter present for little ones – and in purchasing the books you are raising much needed funds for MND research and the Fat Rabbit Research Grant. Gifts that give twice are the very best kind and allow opportunities to talk with your children about donating money to causes that you as a family believe strongly in.
I am also a huge believer in talking with children about mortality and the lives of others in an age appropriate way – and while the Fat Rabbit stories are all lovely little stories about manners and values, there is an endnote in each which explains MND in age appropriate language. Since the death of my brother I have talked often on my blog about the importance of talking to children about grief, illness and other family experiences which children need to process as much as we adults do. Books give us the words to use with children when we cannot find the right words, and using age-appropriate texts to explain incredibly complex issues is the best way I know to raise children who are resilient, empathetic and know the ‘words’ which will help them with their emotional health in the future.
ChickPea has adored the ‘Fat Rabbit’ books – they are gorgeously simple tales of manners and values which feature Fat Rabbit and his friends, and they are perfect for the early childhood age group. She of course likes the burp one the best #sigh. Sometimes the simplest of concepts are the very best and Wayne’s books take young children, particularly his future grandchildren, through a series of lessons about manners and values – and also teach us all a little bit about MND.
It is hard to put in words how it feels to be reading books written, illustrated and published by a man who knows he is dying but ploughs on regardless; such is his passion for story, for reading aloud to young people and for raising money for research into this horrid disease.
About MND (from the Carrot Top Island website)
Motor neurone disease (MND) is the name given to a group of diseases in which the nerve cells (neurones) controlling the muscles that enable us to move, speak, breathe and swallow undergo degeneration and die.
Motor Neurone Disease (MND) is known as amyotrophic lateral sclerosis (ALS) in many parts of the world, and also as Lou Gehrig’s disease in the USA.
Motor function is controlled by the upper motor neurones in the brain that descend to the spinal cord; these neurones activate lower motor neurones. The lower motor neurones exit the spinal cord and directly activate muscles. With no nerves to activate them, muscles gradually weaken and waste. MND can affect a person’s ability to walk, speak, swallow and breathe.
There are an estimated 450,000 people worldwide living with MND . Every 90 minutes, someone else is diagnosed. But most people with MND only live 2-5 years after their first signs of disease. In order to help those who already have the disease, there is no time to waste.
Currently, there is only a single medicine for specifically treating ALS – riluzole. And even this drug, marketed by Sanofi-Aventis under the name Rilutek, only extends survival about 2 to 3 months. So there is currently an urgent, unmet medical need for effective treatments for this devastating and fatal disease.
Purchase the Fat Rabbit Books here.
Learn more about Wayne here.
Hear Wayne in the clip below and just TRY to not cry…seriously what a cause and what a legacy.
Carrot Top Island in it’s Saucer Sea looks pretty darned nice from where I’m sitting.
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