Bury family fundraise for Juvenile Battens Disease charity that gave them extra years with son

Report by Granada Reports Journalist Jennifer Buck

A family from Bury are raising money for a charity that they say gave them extra years with their son.

"Bright boy" Robert Turner started losing his eyesight at the age of five, but he was not properly diagnosed with Juvenile Battens Disease until he was 24.

Robert suffered with epilepsy and hallucinations and started having seizures, but when he was given the correct diagnosis, the correct care helped him live a full and happy life.

Robert's dad Gary said: "He had been diagnosed with paranoid schizophrenia in the mental health unit in Bury so when we got the diagnosis of Juvenile Battens Disease we thought we can do something about it, we can do the research we can find out what's happening."

Robert's mum Pam admits that while the diagnosis came late, it was a "real relief".

After extensive research they enlisted the help of the charity See Ability, and took Robert to live at Heather House, the only home in the country that has specialist care for Juvenile Battens Disease.

Robert Turner

Pam says it was a difficult decision, but absolutely the right one "When we got there with him we knew it was the right place but we were very nervous. They have a couple of little flats you can stay in so we stayed for a week, we couldn't leave him you know it is a very difficult thing to do, only you can look after your son."

Robert quickly started to enjoy his life at Heather House in Hampshire and staff helped him take family holidays and physiotherapy helped his mobility.

Robert sadly passed away at the age of 33, after spending seven years living at Heather House.

Pam said: "We are absolutely convinced that the extension of his life was purely to do with the type of care that he had where he was, the speed of access that they had to all the specialisms."

Robert's family are now fundraising in his memory through the Living Beyond Expectations appeal. They were told Robert may live until the age of 30, but he exceeded that by 3 years, they believe due to the care at Heather House.

Dawn Hawken, Manager at Heather House said: "We have worked with Battens Disease for many years and built up the expertise and skill base around each persons' journey. This fundraising appeal is really important to continue our work."

Pam said: "We can't thank them enough, it was a very special place and that's why we want to do this fundraising."

Click here to donate to the appeal.