Can they be helped to live long lives or are they not going to live for long? Was it picked up fast enough for them?
God love her, it must be torture.
Jesy Nelson #7 same old same old…
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God love her, it must be torture.
It's usually around a couple of years I think?
Sure she said life expectancy is 2 years depending how early it’s picked up
But I'm seeing people in her comments saying they have grown up children with the condition. Just wondering did they pick it up early enough for her girls.
I think from the video she posted, she said the best thing they can do now is just get the treatment and hope for the best
I think that’s correct, but if I’m wrong, please someone correct me
Given they have got feeding tubes, it must mean their swallow/gag reflexes are affected so I would guess it was picked up quite late - although given they were born at 31 weeks it would have been hard to spot among generalised developmental delay.
Yeah no treatment is 2 year life expectancy. They had the treatment that stops any other muscle dying but the ones that already have won’t ever be able to be recovered. So they’ll be in a wheelchair for life and as their legs stopped moving before treatment they won’t ever walk. There’s 20+ year olds living with SMA from her comment section.
They’re at GOSH twice a week she said on This Morning.
They’re at GOSH twice a week she said on This Morning.
That's so incredibly sad
Gosh, I have not been able to stop thinking of Jesy for two days.
I know people are filling her comment section with positivity but it just sucks doesn’t it? No sugar coating it.
I keep thinking of Jesy, a girl in her early 30s now with two babies who need full time care, it is a lot.
My sons in a SEN class, and it’s absolutely wonderful to see how happy those children are, what a special environment they create for them. But being a parent carer.. it’s hard
But my heart is with Jesy
I know people are filling her comment section with positivity but it just sucks doesn’t it? No sugar coating it.
I keep thinking of Jesy, a girl in her early 30s now with two babies who need full time care, it is a lot.
My sons in a SEN class, and it’s absolutely wonderful to see how happy those children are, what a special environment they create for them. But being a parent carer.. it’s hard
But my heart is with Jesy
I actually nearly broke when she said she just wanted to be their mum.
It is sad that it had to take Jesy to speak out for people to listen. Families have been campaigning for a long time and not heard.
Jesy explaining her reasons on This Morning for making the announcement made total sense.
The way this thread started, and now, is day and night. It’s tragic
It is sad that it had to take Jesy to speak out for people to listen. Families have been campaigning for a long time and not heard.
Jesy explaining her reasons on This Morning for making the announcement made total sense.
The way this thread started, and now, is day and night. It’s tragic
For anyone who missed it.
I'm still terrified by her nails though. No matter what she's going through.
Has Zion finished his degree now? That’s so much pressure if he hasn’t
Kelsey Stratford, who used to be on Towie, has spoken about her little sister as she has the same condition as the twins. They were told Kennedy wouldn’t make it 18 months and she’s now reached 13!
Sadly her twin brother died early on
Sadly her twin brother died early on
The earlier it’s picked up the earlier they can be given gene therapy which stops the progress of the disease, it the damage that’s already done can’t be undone.
shes getting so much hatred on TikTok on the video that this morning has posted and I just don’t get it. She’s in an absolutely awful situation and people have no grace!
Hate for what??!
She said “I just want to be their mum, not a nurse” and lots of people are criticising her for that. Also lots of people saying she should be doing more to raise awareness and make changes, but she’s just a first time mum doing her best. My heart breaks for her
Jesy has a tough decision to make now. Does she continue to share her severely disabled twins on social media, when they can't consent (and possibly make money from them) or hide them away and risk being accused of being ashamed/embarrassed by them?
It's a Harvey Price situation all over again.
I do feel for her.
People on TikTok are just bleeps.
This is heartbreaking. My twins are identical, like hers. And the fear of TTTS in pregnancy was huge- we were so fortunate that it didn’t happen, but Jesy went through this too.
Mine were premature and I remember after our NICU stay I was told “just monitor their temperature and breathing and don’t worry if they’re not hitting normal milestones”. As a first time mum you trust everything you’re told. I can’t stop thinking about Jesy, Zion and their beautiful girls.
Mine were premature and I remember after our NICU stay I was told “just monitor their temperature and breathing and don’t worry if they’re not hitting normal milestones”. As a first time mum you trust everything you’re told. I can’t stop thinking about Jesy, Zion and their beautiful girls.