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.

It’s not potentially life limiting - she’s already been told it was found too late so they can’t lift their heads, have trouble feeding and probably won’t walk. They have had treatment to stop it progressing but sadly a lot of damage has been done.

Poor Jesy. 💐

@Playingvideogamesfor heavens sake read what I said again will you. How she's feeling right now is not how she will be feeling forever. I never said anything about how she'll perk up and her feelings will Blow over, which is what you appear to be suggesting.

I rarely feel sad for celebrities but Jesy has had a tough time from the media and what middle age music managers and editors think is pretty, and now this diagnosis for her daughters. I really hope the outcome is better than expected and she finds the support and strength to get through it.

Just clarifying, they were born in May, have been going through tests for the last 3-4 months and have just been diagnosed. They weren't diagnosed at 3-4 months old.

https://www.bbc.co.uk/news/articles/cql4rwee5p3o

Earlier reporting on the gene therapy indicated that it needed to be received within the first 6 months of life and before developing symptoms for the best outcomes.

https://www.bbc.co.uk/news/health-56315870

Do you understand what "progressive" and "life limiting" mean?

Life limiting means dying prematurely.

Sadly, how she's feeling now will probably only get worse.

This has stayed with me today. This is so horribly cruel. So, so sorry to hear what Jesy, her twins and family are going through x

This is just beyond heartbreaking. I was really shaken today when I read her story. To think she thought her twins were finally here safely, and healthy. It’s such a cruel blow.

This has really stayed with me today. To have not one but two babies go through this at the same time is just unimaginable, regardless of your celebrity status or wealth.

I would say that shes been bullied by the public

My heart goes out to her and those precious babies 🥺

Yes I do - why don't you talk to, or watch videos, from other mothers in the SMA community plenty have commented on her post saying similar things to me. To be clear, I haven't said she is going to be singing and dancing soon - I've said that how she's feeling today is not how she'll be feeling forever. They're two very different things.

There's a woman on Instagram called Nanny Amies. I followed her for toddler advice and then she had a baby after many years of TTC and the poor girl has SMA type 1 too. I had never heard of it before that.

My heart goes out to them all.

‘Before developing symptoms’ sadly from what she said the girls were very symptomatic by the time they took them to the doctors, their condition appears to be rapid and severe - they weren’t feeding properly, holding up their heads or moving their legs as would’ve been expected.

Tbh her feelings are probably only get to worse..... Other babies meeting milestones, the million hospital trips, the fact her babies are likely to not have a very long lifespan, the fact thats it's both of them... Sure there will be better days within all of that, however I don't think any of this will get any easier with time.

I really hope it starts being one of the conditions added to the heel prick test

My heart goes out to Jesy and her partner. She is so brave to post in the hope that their experience will help other families and get that early diagnosis

So horrifically sad and cruel. I’m so sorry and sad for Jesy. I’m currently pregnant with twin girls myself and sobbed my way through her video. I just can’t imagine the pain.

It's not ridiculous at all to feel sad for her. It's natural. I feel for her too - and the father of the twins. What sad news. Apparently, her twins may never walk with the condition they have.

😢

So sad, feels like she's had a very rough ride. With it being twins both affected it feels so cruel, I assume they're identical? Though suppose with it being inherited it could still happen that both are affected even if they are not identical.

I've been following nanny ames story recently with SMA 1 but had never heard of it before. I really hope it gets added to the heel prick test.

“Before they took them to the doctors” sounds horribly blaming.

These were premature babies who had lengthy NICU care - they will have already been under ongoing specialist care with paediatrics and regularly seen by doctors. Likely their prematurity sadly masked what might have been picked up on sooner in full term babies with no other health needs.

Jesy explains why they were diagnosed later than is ideal in her video. They were premature and told the girls would reach developmental milestones later than other babies. It seems the first doctor they saw dismissed their concerns.
It's so sad for them all.

Such a desperately sad story to read. Life can be so bloody cruel.

I think it’s very clear from my posts that’s I’m not ‘blaming’.

I’ve been surprised that all the newspaper headlines are about not walking when, although of course being disabled and unable to walk is very difficult, ultimately the worst aspect of this is the life threatening part. It feels insensitive somehow.

These babies have a father too. My heart goes out to Jesy and Zion.

I saw a comment onFB saying the twins will "decide what they can do"
Infuriating.