Jesy Nelson shares heartbreaking moment doctors diagnosed her twins with rare condition

Jesy Nelson has shared the heartbreaking moment her twins were diagnosed with the rare and life changing condition spinal muscular atrophy (SMA).

The ex Little Mix star revealed back in January that her twins Ocean Jade and Story Monroe had been diagnosed with the genetic neuromuscular disease.

According to the NHS, SMA causes muscle weakness, movement problems, issues with breathing and swallowing, muscle tremors, and bone and joint problems.

Now for the first time, Jesy has shared the moment she was given the diagnosis, while she was filming her new Amazon Prime documentary Jesy Nelson: Life Changing.

The new series documents her life after being told her twins had SMA as well as her fight to change UK newborn screening laws.

Jesy has been campaigning for the condition to be added to the newborn blood spot screening test as early treatment can help avoid some of its most devastating effects.

Posting the trailer on Instagram, Jesy wrote: “I’m really not sure where to start with this one… All I can say is that I urge everyone to watch this documentary. It’s the most heartbreaking series I’ve ever had to make, but it’s one that needed to be made if we’re ever going to see real change.

“This is only a small glimpse into what my girls have to go through every single day. It’s the reality that so many children born with SMA have to endure and this is only the beginning of their lives.”

She went on to say that she hopes her new documentary will help more people understand ‘why the heel prick test and treatment from birth are so incredibly vital’.

“Early diagnosis can change EVERYTHING. I’ll keep saying it until no family has to experience this again: no future babies born with SMA should have lives that look like this,” she wrote.

In a heartwrenching clip from the upcoming series, a doctor is seen telling Jesy: “The genetic testing came back positive for Spinal Muscular Atrophy.”

Holding back tears, a devastated Jesy then said: “I can’t believe this is happening.

“My whole life has changed… I don’t know how we are going to do this.

“I feel like I’m going to feel heartbroken for the rest of my life.”

Another clip shows Jesy advocating to have mandatory testing rolled out across the UK, where she says she ‘refuses to allow anyone else to go through this’.

“They could have been able to walk and run and live how a child should live. That’s the part I’ll never be able to accept,” she added when speaking about her daughters’ conditions.

Jesy welcomed her twins with now ex-fiance Zion Foster in May last year.

After being born prematurely, the girls were kept in hospital for three months, with Jesy going on to reveal earlier this year that they have both since been diagnosed with SMA.

Since going public with their condition, Jesy has given updates and shared insights into her and her family’s life.

Jesy Nelson: Life Changing will be released on July 17 on Prime Video.