A mum has written a book to raise awareness of her son’s epilepsy and funds for Demelza

‘A Wobble in My Head – At Home’ is the first of a series of 12 children’s picture book written by Penny to provide a unique insight into 13-year-old Zyan‘s severe illness.

The mum-of-four hopes her creative works will help youngsters to understand how it feels to live with a disability and will give something back to the charity that has done so much for her family.

Penny, whose pen name is Syfornia B, said: “There a lot of misunderstandings about epilepsy. For some children, their condition can be controlled with medication; but Zyan’s can’t. Even after brain surgery Zyan endures up to 12 dangerous seizures a day. When he was younger and he knew a seizure was coming, he would say to me, ‘Mummy, I’m wobbling’.

“It’s so important to me that some of the proceeds of this book go to Demelza so it can continue to help other families like ours.”

Zyan was just four years old when he collapsed after a performance of his school nativity.

Zyan, hypomelanosis of ito syndrome
Tests revealed he has hypomelanosis of ito syndrome - a rare, genetic condition causing severe epilepsy, learning and cognitive difficulties. There is no cure.

With no relatives nearby to turn to for help, Penny from Eltham was relieved to be put in touch with Demelza, who have provided vital care and emotional support for the whole family ever since.

Penny said: “When he was first discharged from hospital, the Demelza care team did a great job in nursing him back to health and have been a part of our journey ever since. I feel proud to call them family.”

Despite being Zyan’s main carer and having to juggle the needs of her three other sons, Penny set her sights on completing a master’s in children’s literature so she could turn her writing dream into a reality.

Penny is hopeful the series will also raise awareness and understanding of children’s disabilities and the help that is available.  

She added: “Demelza blessed our lives and the care and support we’ve received has been invaluable. Zyan has spent so much time at Demelza’s hospice in Eltham over the years. I hope my book will help to break down the stigma about disabilities, particularly among black and minority ethnic communities, and to make it known that help is out there if you need it.”

‘A Wobble in my Head – At Home’ is available to buy for £8.99 on Amazon with 10% of the proceeds going to Demelza. Purchase at smile.amazon.co.uk and Demelza will receive a further 0.5% at no cost to you.