What is spinal muscular atrophy?

AFTER LITTLE MIX SINGER JESY NELSON SHARED AN EMOTIONAL UPDATE ABOUT HER TWINS' HEALTH CAMILLA FOSTER FINDS OUT MORE ABOUT THEIR CONDITION

- 

FORMER Little Mix star Jesy Nelson revealed on social media that her twin girls have been diagnosed with a rare genetic condition called Spinal Muscular Atrophy (SMA) and may never be able to walk.

The 34-year-old singer welcomed twins Ocean and Story with her fiancé Zion Foster prematurely in May and opened up about their SMA Type 1 diagnosis in a video that she posted on Instagram on Sunday.

In the video, Jesy said: “After the most gruelling three/four months and endless appointments, the girls have now been diagnosed with a severe muscle disease called SMA Type 1.”

She added that after her twins were diagnosed with SMA, it was a very rapid process for treatment because “time is of the essence with this disease”.

“When they assessed the girls at Great Ormond Street [one of the world’s leading children’s hospitals], we were told that they're probably never going to be able to walk, they probably will never regain their neck strength, so they will be disabled, so the best thing we can do right now is to get them treatment, and then just hope for the best,” shared Jesy.

“Thankfully, the girls have had their treatment, which, you know, I'm so grateful for, because if they don’t have it, they will die.

“But it has just been endless amounts of hospital appointments. I practically feel like the hospital has become my second home.”

To gain more insight about this condition, here Giles Lomax, CEO at Spinal Muscular Atrophy UK (SMA UK), explains what the different types of SMA are, and highlights some early signs to look out for.

What exactly is SMA?

“SMA is a rare neuromuscular condition, and it affects around one in 14,000 births per year. It’s characterised by the loss of motor function across the whole body,” says Giles.