Sheffield author's touching book about growing up in the shadow of Huntington's disease

Melanie Huntington’s biography, ‘Somebody Up There Likes Me: Living with the Threat of Huntington’s Disease’, discusses how her mother’s death from the disease Melanie to grow up with the threat of developing the condition herself.

Sheffield Telegraph published an article on Melanie 20 years ago, when Melanie was fundraising for Huntington’s disease research before getting tested to see if she would develop the condition.

Melanie’s test came back negative but her brother, Nick, who decided he did not want to get tested, later developed the condition, and Melanie cared for him when his health deteriorated.

Melanie, who lives in Nether Edge, said: “The books is about our relationship and the waiting game to find out if you have this condition.

“It’s a local story about a tricky subject, but people have said that it’s a really easy book to read and really uplifting. There are funny bits, because there always are. It’s not a misery memoir.

“Huntington’s disease is a nasty incurable condition. I just had a feeling I was going to inherit it.

“I had planned not to have children because I didn’t want to bring another child into the world with that condition.”

Melanie explained that she kept a blog, from which the book developed, whilst caring for her brother, which she found to be a cathartic experience.

After Nick died in 2019, Melanie began working on the book, completing it over lockdown before it was published in June.

She added: “It’s a bad deal that carers get in society, you’re doing it for love but you don’t get much recognition or help.

“The books is to help other people feel that they are not alone. Some people said they wish they had read it when someone in their family had developed Huntington’s disease.”

"The message is when life gives you lemons make lemonade, or even a stiff gin and tonic.”

Excerpts from Nick’s diary are also included in the book, as Melanie thought it was important that his voice was also heard.

She added: “Nick really wanted this book to happen, he thought that at least something good would come from his illness.

“We need to talk about Huntington’s Disease. We don’t know enough, there’s a culture of silence. It’s a scary illness.”