Jesy Nelson shares her twin daughters’ spinal braces with emotional message ahead of Parliament debate
JESY Nelson has shared her twin daughters’ spinal braces with an emotional message ahead of the upcoming Parliament debate.
The mum-of-two made a candid post explaining her daughters now have to wear them every day.
Jesy shared a snap of her twin daughters Ocean and Story’s spinal braces as she urged fans to attend the Parliament debate on SMA screening.
She captioned the image: “Just a reminder that future SMA babies’ lives don’t need to look like this!
“These are Ocean and Story’s spinal braces that [they] now have to wear every day.”
Jesy also shared a snap of the Parliament debate poster and wrote: “I hope to see as many of you there tomorrow. It’s going to be a big day.”
It comes after Jesy spoke out about the unjust and “nsane” SMA “postcode lottery” – which “decides if children will be disabled or not.”
The loving mum appeared on social media in a candid video expressing her deep frustrations over ‘unfair’ Spinal Muscular Atrophy (SMA) heel prick testing.
The X Factor star – who has racked up over 150k signatures – is calling for SMA to be tested for at birth regardless of where you live.
The debate is set to take place tomorrow, June 22, and, if granted, SMA screenings will be added for newborns.
The singer’s daughters Ocean Jade and Story Monroe were born prematurely in May last year and were diagnosed with Spinal Muscular Atrophy (SMA) Type 1.
In the emotional video, the singer said: “I just wanted to come on here to basically chat about a few things that are just so incredibly important to me and I know so many other people.
“Some of you may be aware of the fact that I’ve been trying to get SMA as part of the heel prick test here in England, and thank God for you guys, the signatures got over 150,000 and because of that, it is now going to get debated in parliament this Monday coming up, which is just crazy to me to know that we did that and I just need you guys to know that this has never been debated in parliament before.
“There has been a whole community of people that have been screaming and shouting about this for years and years and years, and it’s never been able to get this far, because it’s been ignored every single time.
“But you guys did it, because you made enough noise and you supported this and you got it there and I cannot thank you guys enough…
“So many thoughts have been going through my mind over this week, because every time I think about it, I’m like, how am I going to Parliament on Monday to debate whether children, future children, are going to be disabled or not?
“That’s how deep it is, because if your child gets this treatment from birth with a simple heel prick test and they get this treatment, you would not even know that they have SMA.
“That’s how deep it is, right? That is how life-changing this treatment is. You would not even know that your child has SMA, but if they don’t get this treatment and they don’t get the heel prick test, they will go on to be disabled…
“And not only be disabled, but they will go on to have breathing machines, coughing machines, constant operations. It never ever ends.
“And I still can’t believe that in this day and age, when we’ve had three life-changing treatments now for nearly six years, it’s still a thing. It’s still not here in England.
“It is being rolled out in October, but only in certain parts of England.
“How does that make sense? How are we playing postcode lottery with children’s lives? How is that okay? I cannot stress you how important this is.
“This is our future, future children we are deciding on. Mums now that are currently pregnant and maybe about to have a baby that could potentially have this disease. We’re basically going to decide whether they’re going to be disabled or not, like it blows my mind.
“And I just seem to stress this so much, because that’s how deep it is. We are playing with children’s lives and it is not okay.
“It’s not okay to be like, if you live in this area, your child won’t be disabled, but if you live in this area, yeah, they’ll be disabled.
“We’re not doing this anymore. We’ve made too much noise now for this to be ignored.
“Anyway, sorry for getting irate about this, but it makes me so sad to think that my children’s lives could look so different and not only my children’s lives, but so many other families and children are dealing with this across the whole of England.”
Alongside the tear-jerking post, she added: “We have had some amazing news that screening is due to start in October this year, which is a huge step forward!
“But there’s still a big problem… it will only cover 72% of England. That means some babies won’t be screened simply because of where they live.
“A postcode lottery like that just isn’t fair. Every baby deserves the same chance, everybaby’ss life matters!
“On Monday 22nd June, the petition will be debated by MPs in Parliament. I’ll be there alongside @gileslomax from SMA UK and we’re hoping this debate will help push for screening to be available for every newborn across England.
“We’ll be arriving at 5pm on Monday, and it would mean so much to see as many of you there as possible. We’d love to get a photo together outside Parliament before we head inside.
“Please if you can, tag your MP in the comments and ask them to attend the debate and support universal newborn screening for SMA.
“The areas currently missing out on screening are: Bristol, Cambridge, Portsmouth, Leeds, Liverpool, Oxford.
“No baby should miss out because of their postcode. Let’s keep fighting until every newborn has the same opportunity. Thank you for standing with us every step of the way!”
