A BRAVE young girl battling a rare genetic condition has started a cutting-edge medical trial which could offer hope of a brighter future to thousands of sufferers around the world.

Five-year-old Ruby Crowther has had more hurdles than most youngsters of her age to overcome.

The bright little girl, who goes to Rushwick CE Primary School, Worcester, has a degenerative nerve condition called type-2 spinal muscular atrophy (SMA), which causes the nerves sending messages to her muscles to die off.

We previously reported how Ruby needs a specially adapted wheelchair because she cannot walk and has limited use of her arms.

However, doctors have put her on a new trial involving a new drug called Olesoxime which is supposed to regenerate the nerves damaged by her condition.

She is one of only a handful of UK patients on the year-long trial. There are regular medical checks at Birmingham’s Heartlands Hospital where precise measurements are taken, to guage progress.

However her parents Phillippa and Nick do not actually know if their little girl is on the drug or a placebo drug. (check with Rich) The trial was nearly scuppered when just two weeks before she was due to start she caught pneumonia.

“She was in hospital for a week, and then we needed another week for her to be clear before we could start the trial so she nearly missed it,” said Mrs Crowther of Hayfield Close, St John’s.

“We were really worried,” she said.

“The nurse came round and Ruby had just gone blue so we called 999 and she was in hospital for a week, but her recovery was really quick.

“Doctors said they would expect an adult to recover in about six weeks, so she’s done pretty well.”

The drug made a French pharmaceutical firm has to be taken every day - not with a spoonful of sugar, but with sesame oil.

“The problem is, Ruby knows it’s a special drug and she asks us ‘when will I be able to walk?’ and of course it doesn’t quite work that quickly,” said Mrs Crowther.

“We’re feeling pretty positive about it because both we and her physiotherapist have noticed small changes for the better in her movement.

“But it works very slowly.”