Parents' photo book for hospice

Mr and Mrs Griffith are working in memory of their two late daughters

A family who lost two daughters to a rare genetic disorder are aiming to raise thousands of pounds for an Oxfordshire hospice.

Pete and Rachel Griffith both carried a recessive gene which meant their children had a one in four chance of developing Batten Disease.

Their first two children, Misha and Natalie, were found to carry the gene.

In memory of their daughters, the couple is creating a book of photos to raise money for Helen House in Oxford.

Late Infantile Batten Disease is a progressive degenerative metabolic disease that occurs in children and adults.

It can trigger vision loss, seizures, loss of motor abilities and dementia in children aged between five and nine. The faulty gene is found in just one in 200,000 people.

Ticking timebomb

"We were on holiday in when Misha had her first seizure, at just three and a half years old," said Mrs Griffith.

Their second daughter, Natalie, also tested positive for the disease.

"It was like a ticking timebomb, waiting for Natalie to show signs of Batten's," said Rachel. "But when her seizures started, they were actually more violent than we expected."

Misha died at Helen House in December 2002, at the age of seven. Natalie passed away at home a year later aged just six.

The couple now have two healthy children. Sophie was just a baby when her sisters tested positive for the disease. Zac was born a couple of years later.

Photo book

After her loss Mrs Griffith left nursing in the NHS to work at Douglas House Hospice for teenage children in Oxford.

Her husband Pete hopes to raise up to £15,000 for Helen and Douglas House by creating a photographic book of children in Oxfordshire.

Each of the 250 pages will be sponsored by a family. When the book is completed, he hopes to sell it.

The Griffith family hope the book will not just raise funds for Helen House but help provide a legacy for their two daughters.