Jesy Nelson will “feel heartbroken” for the rest of her life after her twin daughters were diagnosed with spinal muscular atrophy.
Jesy Nelson has shared the moment she found out about her twins’ health conditions
The former Little Mix star gave birth to Ocean and Story – her first children with her ex-fiance Zion Foster – last year and doctors later confirmed both girls were battling SMA Type 1, a rare genetic condition that causes progressive muscle weakness, and Jesy has now shared the moment she was given the painful news.
In a trailer for her new Amazon Prime documentary Jesy Nelson: Life Changing, she is seen breaking down in tears as she says: “The genetic testing came back positive for spinal muscular atrophy.
“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.”
Jesy shared the clip on her Instagram page and told followers it will give a glimpse into her new world dealing with her twins’ health struggles.
In a caption, she 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.
“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.”
Jesy previously headed to Britain’s Houses of Parliament in London last month to witness a debate over SMA testing after she managed to gain more than 150,000 signatures on a petition to trigger a parliamentary debate on the subject.
The pop star has called for all babies to be given a simple test which could pick up the condition at an early stage, but she was left disappointed after it was confirmed the NHS screening of newborns for SMA will not be rolled out nationwide with many areas set to miss out.
Speaking after the parliamentary debate, she told reporters: “‘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?”
