A new book is available to help children cope when a family member has Huntington’s disease.
Called “Harry needs a hug: A story for children learning to deal with Huntington’s Disease,” the 32-page book was written by Emma Terranova, founder of Campaign For My Brain, a United Kingdom-based effort that raises awareness of Huntington’s and other neurological diseases. The book helps children understand what it means to live in a family affected by Huntington’s, a neurodegenerative disorder that typically begins in adulthood and slowly worsens over time.
“Harry is a little boy who has a best friend called Betty,” a blurb from the book states. “One day, the doctors tell his daddy that he has something called Huntington’s disease. Harry talks to his best friend Betty, who helps him to understand HD and supports him through his worries.”
Published by Campaign For My Brain, the book is written in a sensitive manner that also is easy for children to understand. Terranova’s mother and grandmother inherited Huntington’s, a disease characterized by uncontrolled jerking and writhing movements known as chorea, loss of thinking ability, and psychiatric problems. The disorder affects about 6,700 individuals in the U.K. and 30,000 in the U.S.
“We recognize the stigma, isolation, discrimination, and exclusion that sufferers and carers can continually feel,” said a Campaign For My Brain statement in a press release posted on the Huntington’s Disease Association website. “We also know the battle is constant, the battle for getting the care that is rightly due and needed. Along with educating and raising awareness, Campaign For My Brain will be running future projects aimed at making a change to the systems that define what care is needed.”
On the Campaign For My Brain website, Terranova speaks of her motivation behind such efforts. She knows what it’s like to have a loved one with Huntington’s.
“Protecting my Mum has always been a driver for me fighting for what is right,” she states. “The more I have had to fight, the more saddened I feel about those who don’t know how to fight, or cannot. The thought of my Mum going through her disease without me being able to obtain the care I have for her makes me feel sick to the pit of my stomach.”
“Harry Needs a Hug” is available for £8.99 (about $11.57 USD) at Amazon. Through Amazon Smile, however, purchasers can set the Huntington’s Disease Association as the preferred charitable organization, and Amazon will donate 0.5% of the purchase price.
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