Family clings to hope for rare brain disease cure

Three-year-old Teraysa was diagnosed with Batten disease for which there currently is no cure

The family of a three-year-old girl with a rare degenerative brain disease have said they are holding on to the hope that a cure will be found in her lifetime.

Teraysa, who lives in Christchurch, Dorset, began having seizures last December and she was fast tracked for genetic tests when they became more severe.

The results revealed that she had Batten disease, which is likened to childhood dementia, affects only about 40 children in the UK and is terminal. Life expectancy is 10-12 years for most patients.

"It is heart wrenching", Teraysa's mother Stacey said. "I'm not going to have Teraysa when she's reached her teens, I won't ever be able to take her to prom or any of those things."

The incurable illness affects the nervous system, causing seizures, visual impairment and mobility loss and early death.

"At the time we didn't think anything of it, we just thought that it was going to be a case of epilepsy that had come from one side of the family," Stacey said.

"It was such a shock - but we really had no idea of how bad it was, it's all still sinking in."

Teraysa's parents, Stacey and Michael, have started a GoFundMe page to raise money so they can both be there when she undergoes brain surgery

Teraysa's parents want more research to be carried out and say they are clinging on to the hope that a cure could be found in time to save their daughter.

"I know it's rare but this is a killing disease," said Stacey. "It doesn't make it less important than any others.

"Of course, there should be more research into it - no child deserves to die and no parent should have to bury their child."

Teraysa, who has five siblings, is due to start treatment at Great Ormond Street Hospital and it is hoped that this will slow the progression of the disease.

Her family are compiling a bucket list of adventures and have set up a GoFundMe page for her but say that the simple moments, like playing in the garden and walks in the park, are the times they treasure most.

"That's why we have to make the most of right now, it's all we've got," said Stacey.