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Books for Batten . . . Timaru mother Ra Timms, who has a son with Batten Disease and lost a daughter to the illness in 2012, is hoping to fundraise for research into the disease by holding a book sale. PHOTO: GRETA YEOMAN

by Greta Yeoman

A Timaru mother is hoping a book sale may raise some funds for research into a rare neurological disease.

Ra Timms’ son Brad has lived with Batten disease for more than 27 years and her 19-year-old daughter JordynRose died from the illness in 2012.

Mrs Timms described Batten’s as a “neurological metabolic disease” which slowly kills every cell in the brain and eventually every organ in the body.

While the cells in most people’s bodies regenerate during sleep, the cells in the bodies of people with Batten disease do not regenerate, gradually creating a build-up of dead cells.

Most children with the disease are diagnosed by age 5 and develop symptoms early in life, including gradual blindness, physical and mental incapacity, before premature death in their early 20s to 30s.

However, with ongoing research at both Otago and Lincoln universities, children are having a better chance at life, Mrs Timms said.

“These days children live longer.”

Mrs Timms said the Batten Disease NZ group knew of three Kiwi children with the hereditary illness, including her son Brad.

Brad has lived with the disease for 27 years, and despite his early blindness he always “attempted everything” in life, she said.

“He’s still got a fantastic outlook on life, but is now in a wheelchair.”

Ms Timms hoped the research would eventually discover a cure for the disease, which is inherited by a child if both parents have the “bad gene”.

If only one parent passes on the bad gene, the child will be a carrier of the disease.

She said most of the research involved animals that had the disease naturally and while a cure had not yet been found, researchers had developed the ability to replace enzymes in the body, prolonging the life of those with the disease.

Ms Timms hoped to raise more money for the Batten disease research by hosting a book stall on May 26, at 251 Selwyn St, Timaru.

“There is no funding and we don’t have a high profile,” she said of the Batten Disease NZ group.

She invited South Canterbury residents to contact her if they had books to give to the sale.

Contact Ms Timms on 021-477-006.