Jesy Nelson #7 same old same old…

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This is so so sad.

Jesy is very brave to share this news and it sounds like they are really going all out to give the little ones the best treatment as soon as possible.

It’s very heartbreaking 😔
 
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Poor babies. She probably thought they were out of the woods once they were out of the NICU and now this. It's a good thing her mum noticed.
 
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I wonder if any of the girls will reach out. I don’t think I’d be able not to regardless of everything that happened
 
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Feeling genuinely very sorry for Jesy after seeing the story, it's the most heartbreaking situation. Hope she is being well-supported.
 
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Life can be so b cruel. I hope they've got lots of emotional support, they must be utterly devastated.
 
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I feel absolutely awful for her

Playing Little Mix in the gym this morning, much happier times, it all felt so care free
 
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Zion has shared a photo of the twins who have NG tubes and your heart aches looking at them thinking of how short and hard their lives are likely to be.
 
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Apparently the NHS only screen for 10 gene disorders at birth 🙁 the US screen for 59, Italy 48… most European countries are 20+.
 
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Apparently the NHS only screen for 10 gene disorders at birth 🙁 the US screen for 59, Italy 48… most European countries are 20+.
It’s absolutely mental how they don’t test for SMA when timely treatment is so important and they can never get the damaged muscles back 🫤☹

it needs to change ASAP.
 
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It’s absolutely mental how they don’t test for SMA when timely treatment is so important and they can never get the damaged muscles back 🫤☹

it needs to change ASAP.
It is mental.

I really hope this changes now, such an early diagnosis can help so much.

Sadly too late for Jesy and her twins....
My heart goes out to her.
 
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It's a very rare condition though. Only 70 babies a year in the UK are born with it. Screening is a huge NHS resource, though I appreciate that if your children have it you would feel angry that it isn't screened for. Even with early intervention, the long term prognosis is very poor.
 
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