Abertillery family in 'race' to save baby Amira Nethercott

Amira Nethercott, 18 months old, has been diagnosed with the rare condition of spinal muscular atrophy (SMA) type one.

Without treatment, the condition claims the lives of children by the age of two.

But little Amira has received a big miracle – a new treatment that has stopped the two-year life expectancy from chiming out.

Amira suffers from respiratory weakness (Image: Wales News Service)

She is eligible for a gene therapy called Zolgensma, which helps improve motor function.

Her family describe the revelation as a “light at the end of the tunnel”.

But the treatment is costly and the family has already exhausted their savings.

Amira’s mum, Kainat, 24, has set up a GoFundMe page to raise £20,000.

More than £3,000 has been raised so far.

'Each day is a blessing'

Babies with SMA type one show symptoms within the first six months – including weak and floppy limbs, eating problems, breathing problems and being unable to lift their head.

Father-of-two Cairan Nethercott, 26, said: “It originally started when we noticed that she wasn’t moving as much as she should be. So we were kind of worried.”

Doctors had their suspicions at a six-week check-up and tested Amira for SMA two days later.

They were called into Noah’s Ark Hospital to receive the results.

Cairon, from Abertillery, said: “I pretty much knew from there it was positive, and she did have SMA.

“We walked in the room and there were like five or six consultants there. They broke the news.”

Since the diagnosis, Amira has experienced respiratory weakness and limited use of her limbs.

Kainat added: “While the treatment has halted SMA's deadly progression, no one can tell us for certain how long Amira has. Each day is a blessing, but it also carries the weight of the unknown.

Amira's mother, Kainat, said: 'Each day is a blessing, but it also carries the weight of the unknown; (Image: Wales News Service)

“The cost of Amira's ongoing treatment, which includes physiotherapy and other essential therapies, is staggering. We've already exhausted our savings, and the financial burden is overwhelming.

“Every pound you contribute will go towards ensuring Amira continues to receive the care she so desperately needs. Physiotherapy, occupational therapy, and specialised treatments have become a lifeline for our little warrior.”

To view the fundraiser and donate, visit https://t.ly/a58jE or click here.