Woman with multiple rare conditions writes novel

A woman from Herefordshire, who has spent her life living with multiple rare conditions, has written a book to inspire others who are similar to her.

Zoë Castle, from Leominster, was diagnosed with the congenital heart defect Tetralogy of Fallot from birth, as well as DiGeorge syndrome and scoliosis.

She is also partially deaf, partially sighted, and has a mild learning disability.

Discussing her novel, Between Heartbeats, the 29-year-old said: "This book is for anyone who feels different and doesn't see themselves as perfect."

She added: "It follows a teenage girl called Aria Chapple, who undergoes major heart surgery and while fighting for her life, creates a world within her head.

"Aria enters five different chambers and in these chambers she faces her struggles from growing up."

Castle has already endured two open heart surgeries, her first when she was just a one-year-old.

Asked about her conditions, Castle said: "I have DiGeorge syndrome, which affects every part of my life.

"I've also got scoliosis, I'm partially deaf and I'm partially sighted, and I do have a mild learning disability.

"But my Tetralogy of Fallot, particularly, has shaped every single part of who I am.

"I've never really known life without hospitals, operations and the fear of uncertainty.

"But it has made me more resilient and made me realise it is my superpower and my strength."

Her mum, Di, said early life with her daughter was a "living nightmare".

"At birth, we initially saw that Zoë had two white eyes. We thought it was cataracts but it then transpired she was virtually blind.

"She would potentially just see light and dark, and that was a huge shock. The same evening she went blue and we found she had a condition called Tetralogy of Fallot.

"As you can imagine, that was pretty devastating. I had no idea I was going to be hit with all these issues and basically everything spiralled for us.

"She was put in a special care baby unit. That's when it became a living nightmare for a little while. I was a young mum and it was devastating."

But she added: "I think it's made us both strong. I'm a very, very proud mum, and I know her dad is as well. She never ceases to amaze me."

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