THE parents of a 13-month-old girl from Blaenau Gwent have spoken of how they discovered their daughter had a degenerative condition which is fatal if left untreated.

Dani-Rae Brown lives with her father, Charlie, and mother Tyler in Abertillery.

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In April this year, her parents began to notice worrying signs in her behaviour.

"As time has gone on things have deteriorated to the point that she can no longer sit unsupported," Mr Brown said.

"She has limited use of her arms and can only support her neck for a little while."

Dani-Rae was taken for a round of inital genetic tests, but they came back normal.

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However, Mr Brown explained that doctors then carried out a specific test for a condition called spinal muscular atrophy.

"It was to dectect the SMN1 and SMN2 gene and that’s how they found out," he said.

SMA is a degenerative genetic muscle condition, which can lead to respiratory failure before the age of five.

Usually, children are only born with SMA if both parents have the gene.

Around one in every 40-60 people is a carrier, with one in 10,000 children are born with the condition.

"We had a phone call at 7pm on the night of November 15 and then we were called into hospital a week later once a bed had become available," Mr Brown said.

"If left untreated it is fatal."

However, there is hope in the form of gene therapy.

"With the treatment alongside physiotherapy and hydrotherapy we hope for her to gain some independence," Mr Brown said.

Dani-Rae will be travelling with her parents to Bristol for the treatment next week.

"It costs the NHS £1.8m for the treatment, but my daughter is worth every penny in our eyes," Mr Brown said.

"We just want to give her the best chance we can for a good quality of life."

Dani-Rae's parents have set up an online fundraiser to help pay for her treatment and, at the time of writing, it has already surpassed £3,000.

One generous person even donated £1,000.

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"It feels amazing that people have been willing to help us out so much," Mr Brown said.

"I think it will be a very quiet Christmas, as after treatment Dani has to keep away from everyone for a while but we must protect her the best we can."

To support little Dani-Rae in her fight against SMA, visit the fundraising page here.