Jesy Nelson

[EvangelicalAboutButteredToast]

Just read the online news story in regard to her beautiful little baby girls.

I know it’s ridiculous but I feel so sad for her and her little family and I suppose I just wanted to write it somewhere. I followed the story online when she was fighting so hard to keep both the babies safe during her pregnancy and saw the interviews she gave. I understand they now have a potential life limiting condition although I know with early diagnosis there is a better prognosis now.

I watched her documentary when she was struggling so much with public life and the pressure she felt to conform to a conventional pop star and be pretty and slim. I could relate to her feelings and just wanted her to get her happy ever after. Life can be so cruel.

I saw this story on the BBC News website. I had no idea who she was but found it a very sad and moving story.

It's always hard when women go through a difficult pregnancy and then find out that their new baby/babies have any kind of health problem. It must be absolutely devastating to be told that they have such a severe health condition.

Just to clarify both of her twin daughters have been diagnosed with Spinal Muscular Atrophy Type 1.

Absolutely devastating - I can’t imagine what she’s going through.

God that is horrendous news. Poor family.

The poor woman. She has been so vocal about her struggles with growing up in the public eye and mental health surrounding that, then her difficult pregnancy and now this. I can't imagine how she's feeling but I hope she knows she won't be feeling like this forever

I know you mean well but that last line is inappropriate given SMA1 is an invariably fatal and life limiting condition with no cure. She will be going through hell and I doubt further down the line she will perk up, whatever happens.

Oh no, I knew she was having twins...how terribly sad.

for info.

https://www.gosh.nhs.uk/news/gene-therapy-research-boosts-sma-outlook/

It's a cruel condition and carried recessively. You may not know you carry it if there are no cases in your family.

https://www.gosh.nhs.uk/news/pre-screening-for-spinal-muscular-atrophy-could-change-lives/

Really sad, she’s had a tough ride already.

She popped up on my TikTok. I didn’t know of her, but what a horrible tragedy. I guess if you don’t know you carry the gene, you’re not screened for it antenatally. It’s tragically cruel.

Gene therapy is making terrific advances in a lot of genetic conditions now. Completely changing lives. I do hope this is an option for her twins one day.

I saw her tiktok post and it broke my heart for her. She has been through so much, this is just cruellest. Those poor babies.

Gene therapy already exists for SMA and I'm sure her twins will now be receiving this. But sadly gene therapy can arrest the progress of the disease to some degree but it will not regenerate neurons that are already wasted. Jesy's twins weren't diagnosed early enough as their lack of mobility was attributed to prematurity and it sounds like their conditions are quite advanced (this type of SMA is devastatingly fast) as she says they can no longer hold their heads up.

I wish her the gift of time with her girls and hope if anything can come out of this it will be newborn screening for SMA, as it's likely early diagnosis will make some difference (but there are still no miracles even then).

It's absolutely devastating.

It’s so sad. I didn’t know about this condition. Now the twins have had the gene treatment will they survive but be physically disabled? Or is it progressive? How awful- what a horrible horrible thing to go through

from what I have read i think the baby needs to be diagnosed straight away to get the best possible outcome early intervention is key and apparently this can be diagnosed by a simple heel prickly blood test
this should be offered at birth to check for this but I don't think it is

Not that much tugs my heart these days but this is truly upsetting, poor girl.

There are calls for making screening for this disease available with the newborn heel prick test. Perhaps this is something @mumsnet can get behind.

It’s absolutely heartbreaking for her and her family. I really do think the heel prick test should be offered to all newborns

Obviously early detection would be beneficial in terms of coming to terms with it and implementing any treatment straight away but would it actually ever mean that the babies would recover?

Of course they won’t recover. But the treatment would be maximally effective if given at the earliest possible opportunity.

I have read so many idiotic comments on social media about ‘fighting’ and how the girls will ‘defy the odds’ which is ridiculous given their diagnosis. My heart goes out to Jesy. She has been through an incredibly tough time and this is just devastating.

I saw the news about Jesy and Zion’s little girls earlier today. Truly heartbreaking. I just hope that they both have good people around them who can support them in the coming weeks, months and years. Jesy has been very brave in speaking publicly.

I can’t say I’ve been her biggest fan with some of her behaviour in the past years. But I certainly sympathise with her right now. She has had a terribly tough pregnancy and it’s awful that this has come. I feel for her and her family.

So SMA is a disease where motor neurons gradually degenerate over time, leading to muscle wastage, similar to mnd. So a baby with SMA is born with apparently normal motor function.

Once neurons have died, there is no treatment (and no treatment in development or trials, absolutely nothing) that can regrow or reactivate them. They are gone for good.

What gene therapy does is reduce the rate at which the neurons die. It's not a miracle, it doesn't stop progress of the disease altogether, it just slows it. It's a new treatment and reports of how effective it is are variable. But yes, early detection will likely improve outcomes because the more functioning neurons the child has at the point of starting treatment, the better the chance of maintaining function. The tragic thing about jesy's twins is they were only diagnosed at 3-4 months by which time there's already significant progress.

I didn't know much about her but I read this earlier and saw her babies were premature as well. What a heartbreaking diagnosis. Poor family.

Definitely. Because it’s possible to do it but in the uk it wasn’t included as the costs weren’t considered worth it for the small numbers. Heart breaking.