THE family of a baby with a rare terminal illness is raising funds for a hospice.

Dollie Gorringe, who is only five months old, has been diagnosed with Aicardi-Goutieres Syndrome (AGS), a genetic brain disease with no cure.

Her symptoms started when she suffered a seizure at the age of six weeks, which led to her being admitted to Bradford Royal Infirmary.

She stopped feeding and an MRI scan and a series of blood tests were taken. They were analysed by researchers at the University of Manchester who diagnosed on February 1 that she had AGS.

Dollie is now tube-fed through her nose to her stomach and is on seven different types of drugs.

AGS affects newborn infants and usually results in severe mental and physical handicap.

There are two forms of the syndrome, an early-onset form that is severe, and a late-onset form with that has less impact upon neurological function. The early-onset form affects around 20 per cent of all babies with who have AGS.

Dad Luke Gorringe, of West Royd, Wilsden, who is a trainee quantity surveyor, is now raising funds for Boston Spa-based Martin House Children’s Hospice, after visiting its base earlier this month. His online donation page has already raised more than £1,900.

He said: “There is nothing they can do, there is no treatment for Dollie. She won’t make it out of childhood.

“All we can do is make her as comfortable as we can. Every day is a blessing. We value every single second we have got with her. She is my little girl.

"Every day I feel like my insides have been ripped out.

“She has started smiling now and laughing her little head off. She is more settled now, she’s a lot happier.

“She will be pretty much nil by mouth.

“It’s a rare genetic disorder. Unfortunately, it means she is terminally ill and we have no idea how long we have with her, so we want to make every day as special as possible for her.”

Mr Gorringe said he is planning future fundraising events for Martin House.

He added: “We spent a weekend at the hospice, which does an absolutely fantastic job of supporting parents like us and children like Dollie.

“We will be planning a lot of fundraising for them and would appreciate it if people would get involved to contribute towards this great charity.”

Mr Gorringe, 30, and partner Chrissie Daines, 31, will hold a christening service for Dollie and their son, Leighton, four, at St Matthew’s Church, Main Street, Wilsden, on March 5.

Mr Gorringe fears Leighton might also have a form of AGS, after he was given a temporary diagnosis of cerebral palsy two years ago. Leighton’s DNA is now being tested. They also live with Miss Daines’ son from a previous relationship, Lewis, 12.

Anyone who wants to help the family’s fundraising campaign should go to justgiving.com/Martin-House-Dollie-Gorringe.