Jesy Nelson has shared her heartbreak following a recent debate about full spinal muscular atrophy (SMA) screening.
The singer’s twin daughters, Ocean Jade and Story Monroe Nelson, were both diagnosed with the rare condition. The condition leads to progressive muscle wastage. Since finding out about their diagnosis, the Touch hitmaker has continued to raise awareness.
And now, after Public Health Minister Sharon Hodgson argued against a full national rollout of SMA screening, Jesy is livid. She revealed she feels “deeply let down and disgusted”.
Jesy Nelson reveals heartbreak after debate
On Tuesday (June 23) Jesy took to her Instagram. She shared an emotional video reacting to the public health minister Sharon Hodgson arguing against a full SMA screening roll-out.
“I listened to clinicians, experts, families, MPs all give their arguments as to why this is so important to be rolled out across the whole of England,” Jesy said.
She added: “So my question to Sharon is, if it’s safe enough for 72% of England to get this test at birth, then why is it not good enough for the 28% of England to not get tested at birth? How does that make any sense?”
Jesy then said she showed a video of two sisters diagnosed with SMA to the MP after the debate. The siblings received different treatments with one being in a wheelchair and the other able to run alongside her.
According to Jesy, MP Sharon Hodgson was surprised by the video. She said she didn’t realise the full extent of early treatment.
I cannot tell you the outrage that I feel
Jesy added: “How do we have a health minister standing up in Parliament arguing why this should not be rolled out across the whole of England, when she doesn’t even know how life-changing this treatment is, she doesn’t even know the effects that it has?
“I cannot tell you the outrage that I feel as a mother with two children who are suffering with SMA type one. This awful disease, how heartbreaking it is to hear someone try and argue against why children with SMA, future children with SMA, should be denied of this.
“You are basically telling me that if you live in a certain postcode, you’re not as important as the other 72% of England.”
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Jesy says her twins ‘could have been walking by now’
She continued: “I cannot tell you how heartbreaking it is to know that my children’s lives could have looked completely different. They could have been walking by now. They didn’t have to be on breathing machines, they didn’t have to have coughing machines.
Jesy went on: “I have to give them medicine every four hours. I have to turn them every two hours, because they can’t do that themselves. I have to make sure they’re not choking, I have to watch them so closely to make sure that they don’t choke on their own saliva. Because this disease has affected their muscles with their swallowing
“To know that there are people that are literally making this decision to make children suffer. I have no words. When are we going to get answers, and when is this going to change, because this cannot go on.”
Jesy ‘will keep on fighting’
What’s more, the day after, on Wednesday (June 24), Jesy took to her Instagram again. She shared a photo of her holding a sign with the hashtag ‘Screen Today For MSA’. In the caption, she again expressed her frustration over the result.
Jesy said: “The outcome wasn’t what we hoped for. I feel deeply let down and disgusted that we are still choosing to let future Sma babies suffer with this awful disease, when this doesn’t need to be the case!
“But I will keep on fighting until one day no future Sma baby will miss the opportunity to get screened from birth and given life-changing treatment just because of where they live.”
Read more: Jesy Nelson to lift lid on real reason for her split with Zion Foster in new documentary
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