Jesy Nelson has shared a heartbreaking video of herself sobbing after learning her twin daughters have been diagnosed with spinal muscular atrophy (SMA), a rare genetic condition that causes muscle weakness.
Emotional Diagnosis Revealed in Documentary
In footage filmed for her upcoming Amazon Prime Video documentary, Jesy Nelson: Life Changing, the former Little Mix star is seen breaking down as a doctor delivers the news. The doctor tells her: "The genetic testing came back positive for Spinal Muscular Atrophy." Nelson buries her face in her hands and says: "I can't believe this is happening."
According to the NHS, SMA is a rare genetic condition that can cause muscle weakness and deteriorates over time. The Mirror reported that Nelson admitted her entire world has been turned upside down, and she was expected to find the diagnosis difficult to cope with. She says in the video: "I don't know how I'm going to do this. I feel like I'm going to be heartbroken for the rest of my life."
Campaigning for Change
Despite her grief, Nelson insists she won't allow others to endure the same pain and is now campaigning for laws and guidelines around SMA screening. Last month, she was at Westminster as MPs discussed whether to screen all newborns for SMA. Her petition calling for all newborn babies to be tested for the condition garnered more than 150,000 signatures.
In the caption for the documentary trailer, Nelson 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."
She added: "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."
Nelson concluded with an appeal: "Please if you watch one thing, let it be this: Jesy Nelson: Life Changing on Prime Video UK. Streaming from July 17th."
