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.

At the very least it will raise awareness which is great as I had no idea about this condition and symptoms and I am sure many others didn't either. But hopefully there is more that can be done in pushing for the test to be added in the UK the same as it is in other countries. Feels that this should have been more of a priority than the chicken pox vaccine (I am sure others will disagree).

I saw this last night and my heart goes out to her and her husband.She seems very brave .I think she said she feels like a Nurse sometimes with all the medical equipment as well.Very sad

For those saying this needs adding to newborn screening, I don’t think anyone has posted this info. The NHS is currently undertaking a pilot programme called The Generation Study. Newborns in a selection of hospitals across the UK are offered genetic testing for around 200 conditions. SMA is one of them. This is to test if genetic screening ought to become mainstream for newborns and is currently done alongside the heel prick.
It’s really important to understand that effective treatment for SMA is very very new. The conditions on the list for the Generation Study are only those for which an effective early treatment is known.

My daughter was born in September 2025 at Birmingham Womens Hospital, she participated in the generation study

My hospital runs the Generation study and I was all up for taking part - ironically, the fact I'm having twins rules me out of it. This may be different for identical twins (which I believe Jesy and Zion's are) - mine are non-identical.

That is great but the question has to be asked why do other countries already have it as part of their screening?

I think one of the answers is probably around the ethics of testing for conditions that you can do absolutely nothing about (before there was any treatment) and the cost / benefit of that too.

The answer is usually money isn’t it. We have an NHS. Other countries fund things differently. Hence why we’re only just introducing chicken pox vax I’d imagine. Much as I love the NHS…!

My heart goes out to Jesy, her partner and her family. Having a child/children with complex needs and disabilities is an incredibly difficult path. Impossible sometimes.

You're exhausted mentally and physically , yet you neglect yourself because you know you're the expert when it comes to your children's needs. It's lonely because you can't have regular mum friends as they don't understand what you're going through. And often seeing regular children thriving just reminds you of your daily heartbreak.

I'm so sorry for them all. I hope those little girls are receiving the best treatments available.

In her video she says it’s two weeks from diagnosis and they were born in May so more like 7 months. Very sad.

If they do then I hope they do it privately and with wholly good intentions. I remember finding the members of Girls Aloud's reaction to Sarah Hardings terminal diagnosis a bit off. A couple of them just made their entire statement about themselves and their feelings.

Jesy and her partner need proper unconditional support and I hope they have it. My heart goes out to them and their beautiful precious girls.

This is not true. Please don't make comments like this unless you know what you're talking about. When my son was diagnosed mums net was one of the first places I came to to try and find other parents that I could connect with.

My son has this condition and the treatments that are now available have changed this.

In the past that might have been true but it is no longer the case.

My son is almost 7 diagnosed at 11 months old although I knew that something wasn't right but was at first dismissed, then told to wait and see a lot of others I know with SMA have had similar experiences.

There are now 3 treatments available one being gene therapy. There are also other treatments in clinical trials that may change thinks further.

Newborn screening for SMA is being added in Scotland in the spring and hopefully the rest of the UK will follow.

https://share.google/jw17piN8gjSUXr854 SMA UK

Those of us unwillingly in the rare disease community know how important awareness & fund raising are in driving research into successful treatments. Jesy has raised awareness by sharing her story.
I would support screening parents too for known issues ( as I've seen done for IVF ).

Jesy was on This Morning yesterday talking about it - there was a doctor on too who gave more info about the newborn testing, you can Google the clip. I found it very moving - a simple test could have made a difference to the lives of her babies. So sad that concerns were brushed off due to the twins being premature.

Awww, more sadness for Jesy. 😢 Her and Zion (the father of her twins) have split up after just under three and a half years. The stress of what has happened with their twin babies is a contributing factor.

https://www.standard.co.uk/showbiz/jesy-nelson-zion-foster-split-twins-b1267081.html

Thanks for this. I will see if I can find this clip on Google.

I just feel so sad for her, she must feel like her life has gone over a cliff in the space of a few months. I hope this isn’t a case of man leaves woman to raise disabled DC with just a few visits as ‘he can’t cope with it’

Oh no poor jessy

wow doesn’t take men long to fuck off when the going gets tough