Jesy Nelson calls for screening programme to diagnose condition affecting her newborn twins

The 34-year-old singer, who gave birth to twins Ocean Jade and Story Monroe Nelson-Foster prematurely in May with fiancé Zion Foster, revealed yesterday that the babies have been diagnosed with SMA1 - a rare disease known as spinal muscular atrophy.

On Tuesday, Jesy said in an Instagram story: “Hi guys, I just wanted to come on here to do another video to basically say thank you, genuinely so so much from the bottom of my heart for just the outpour of support and beautiful messages for me and so many other families that are dealing with this horrible diagnosis.

“I’m genuinely actually really overwhelmed by the amount of support.

“I just want to say thank you to everyone that shared it, to everyone that wants to learn about it, that’s taking the time to watch it and taking the time to send me beautiful messages.

Read More: Little Mix's Perrie Edwards opens up on heartbreak of two miscarriages

Read More: Jesy Nelson reveals her twins are unlikely to walk following rare diagnosis

“Thank you from me and the SMA community just appreciate it so much.”

The star then shared: “Also I just wanted to let you guys know that I am starting a petition to try and get the SMA on the newborn screening heel prick testing from birth and I just need you to know that I am so determined to make this happen.

“So I am going to fight as much as I can to make this part of the newborn screening.

“It’s currently under review, so I will keep you updated with that one guys.”

The NHS does not currently screen newborns for SMA testing in its screening program.

Explaining the condition on Monday, the star posted a video saying: “We were told that they’re probably never going to be able to walk."

She continued: "They probably will never regain their neck strength, so they will be disabled, and so the best thing we can do right now is to get them treatment, and then just hope for the best.

“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, endless amounts of hospital appointments, I practically feel like the hospital has become my second home.”

She said the diagnosis was made after her mother noticed the twins “were not showing as much movement in their legs as they should be”, and they later began to struggle with feeding.Nelson said when she first went to see doctors they told her “don’t worry, it’s fine”, before the eventual diagnosis of SMA1, which the NHS says causes muscle weakness, movement problems, problems with breathing and swallowing, muscle tremors, and bone and joint problems.

Becoming emotional, Nelson added: “The reason I wanted to make this video was because the last few months has honestly been the most heartbreaking time of my life.

“I literally feel like my whole life has done a 360, I almost feel like I’m grieving a life that I thought I was going to have with my children, and I’ll have to be grateful because at the end of the day, they’re still here, and that’s the main thing, and they’ve had their treatment.

“And I truly believe that my girls will fight all the odds and, with the right help, they will fight this and go on to do things that have never been done.”Nelson said she had made her children’s diagnosis public as she wanted to raise awareness of the condition.

She added: “If anyone is watching this video and they think they see these signs in their child, then please, please take your child to the doctor, to the hospital, because time is of the essence, and your child will need treatment.