Jesy Nelson shares raw footage of herself finding out about her twins' SMA diagnosis in emotional new documentary: 'I'm going to feel heartbroken for the rest of my life'

shares raw footage of the moment she found out about her twin daughters' SMA diagnosis in her new Amazon Prime documentary, Life Changing.

The singer, 35, gave a first look as she dropped a trailer for the programme on Thursday, ahead of its release on July 17.

Jesy revealed in January her twins, Ocean and Story, 13 months, had been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare muscle-wasting condition. 

The late diagnosis means her daughters are likely to never be able to walk, and have specialist equipment to help them breathe at night as well as feeding tubes. 

In the emotional clip, Jesy is cradling her eight-week-old daughters as a doctor tells her their results: 'The genetic testing came back positive for Spinal Muscular Atrophy.'

Breaking down in tears, Jesy tells the camera: 'I can't believe this is happening. It's the most severe muscle disease a baby can have.

'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.' 

Elsewhere in the trailer, Jesy opens up about the many hospital appointments she has to attend: 'I get bombarded with hospital appointments, my whole life has changed.'

Alongside the clip, Jesy heartbreakingly penned: '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.

'I truly hope this helps 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.

'Please if you watch one thing, let it be this: 'Jesy Nelson: Life Changing' on @primevideouk, streaming from July 17th'

Last month, Jesy headed to parliament for a debate on whether a newborn screening for the disease would be rolled out across the whole of England. 

Devastatingly the result of the debate was not what Jesy and the SMA community had hoped for and as it stands only 72 per cent of the country will have access to newborn screening when it is introduced in October, while the other 28 per cent still won't.  

Leaving parliament Jesy fought back tears as she said: 'I'm going to be completely honest, I was absolutely fuming. I feel so let down. 

'I have no more words. It's sad. It's so sad, like our children's lives could look so different, and to know that we are still debating it. We are debating whether SMA future children should be disabled or not. 

'Based on where you live, how does that make sense? How is that fair? How is that fair?'

The parliamentary debate was prompted by a petition launched by Jesy, which gained more than 150,000 signatures.

The staggered roll out has been introduced under the advice of the UK National Screening Committee who want to evaluate the effectiveness of the screening and the cost to the NHS. 

Among the areas that will miss out are Bristol, Cambridge, Leeds, Liverpool, Oxford and Portsmouth.

The trial will involve seven of the 13 testing laboratories available to the NHS.

Speaking in parliament, Sharon Hodgson said the remaining six laboratories 'do not currently have the requisite equipment' for testing. 'If that changes, more labs could be included,' she added.

Later Jesy addressed her followers over on Instagram as she reflected on the disappointment of the day and called out Sharon Hodgson, who is the Parliamentary Under-Secretary of State in the Department for Health and Social Care for the decision. 

She told her viewers: 'There is factual evidence that this treatment, if given from birth is completely life changing to a child that is diagnosed with SMA. 

'If it isn't, and they get left untreated, there are facts that if your child doesn't get treatment, they will not see their second birthday. They will die before the age of two. And there were families in that room yesterday that had children that have died from this horrendous disease. 

'And we had the Health Minister Sharon give her argument against why it should not be rolled across the whole of England. 

'So my question to Sharon is, if it's safe enough for 72% of England to get this tested at birth, then why is it not good enough for the 28 per cent of England to not get tested at birth? How does that make any sense? 

'Her exact words were, "need to make sure that this does more good than harm." Please tell me how that statement makes any sense.'

Jesy went on to explain that she spoke to Sharon after the debate and asked her whether she had ever met a child with SMA. To which Sharon said she hadn't. 

The singer then showed Sharon a video of sisters Maisie and Amelia, who both have SMA however one was treated from birth and the other wasn't. 

She explained that they have the exact same diagnosis but one is in a wheelchair but the other is running along, pulling her sister along.