Families of children suffering from a rare debilitating condition have been given fresh hope in the form of new clinical trials.

Rett Syndrome strikes down mainly girls at a young age and causes sufferers to lose the use of their limbs and become unable to speak.

The condition, which has remained untreated, also causes severe breathing problems and can leave sufferers in a wheelchair and unable to move or communicate.

Colleen Rooney’s sister, Rosie, suffered from it before she died in 2013.

Parents of children effected started a charity, trying to find a cure or discover drugs to treat the devastating symptoms for the life-limiting neurological disorder which affects around 12,000 girls in the UK.

Now, new hope has been handed to crusading families after the early stages of clinical trial began last month.

It is hoped testing of the new drug Sarizotan could help regulate breathing of patients, which is the root cause of many knock-on symptoms such as seizures.

Six-year-old Amber Starbuck was diagnosed aged two with the debilitating disease and mum Sarah, who works voluntarily for the charity Reverse Rett, has been desperate to get help for the condition.

Sarah, from Tadworth, said: “The charity is driven by families of girls with Rett Syndrome to find a cure.

“Until now there’s been no real treatment for the condition, which is pretty horrendous.

“Amazingly we found a doctor who wants to set up clinical trials in London which will be the first trials in the UK to try and treat breathing, which is one of the worst symptoms.

“The problems with breathing patterns have a knock-on effect for a lot of other health problems, so this would a really big breakthrough for so many people.

“This trial is to treat the symptoms - the hope is that it will help regulate the breathing pattern as it is causing a lot of other problems and eventually that could lead to a cure.

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“When it happens she (Amber) struggles to take breathe and it’s like having a panic attack. If that can be regulated then she should stop having seizures and have a much better quality of life. The improvement will be massive.

“If this drug can actually improve her breathing it will have a significant impact on the quality of life for so many girls who suffer from the condition.

“We are trying to reach out to families, it’s really important to get the word out that these trials are going on because there are parents of children who suffer from Rett who don’t know about them.”

The tests will be led by Dr Paramala Santosh at Kings College London, and are currently going through the screening stage for patients aged 13 and over.

Trials will include younger girls if these double-blind placebo-controlled courses, which are also taking place in the US, Italy and India, are successful.

Mum-of-three Sarah added: “Amber seemed like a healthy child, but we started noticing there was a problem when she started missing milestones like she hadn’t started to walk or say any words. She had started to crawl but didn’t progress.

“It took nine months to get a diagnosis, but other girls will start working and talking, then start losing the use of their hands, then they can’t speak, which is far more distressing. It’s pretty horrendous.

“It’s a spectrum, some girls can walk up until they are adults, whereas some are in a wheelchair by aged four.

“Amber can’t walk on her own without someone holding her hand, she used to be able to sit, but at three she lost the use of her hands.

“She can now communicate with eye-gaze technology and she is starting to get really good at using it.”

Researchers in Edinburgh discovered in 2013 that Rett could be “reversible”, when they made the symptoms disappear in mice after a gene which causes mutaions was found in 2001.

Rachael Stevenson, co-founder and executive director of Reverse Rett, also has a daughter called Amber who suffers from the disorder, aged 21, along with a 16-year-old stepdaughter with the condition.

The 41-year-old from Manchester said: “She is now in a wheelchair and very disabled and needs to be hoisted by two people.

“Around 51 per cent of Rett suffers died from breathing or respiration problems, some from pneumonia, others from symptoms similar to Sudden Infant Death Syndrome.

“We are excited, this could be a it’s a real positive step, we are very grateful to Dr Santosh and his team for what they have done so far.

“We are in a race against time with Rett Syndrome. Every day people with Rett are plagued with difficult symptoms which they desperately need treatment now.”