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.

God love her. It’s just cruel.

I saw Jessie’s video this evening and I was really sad listening to her, and shocked. How fucking cruel can life be ? It seemed like she finally had her happy ever after and now this. I can’t imagine how she and Zion are feeling right now, absolutely heartbreaking. I hope this gives SMA the platform to get the nhs into action and make this part of the newborn screenings

Truly devastating news for this poor young couple. I hope they have a lot of family support …so awful . Jess was very brave to make that video.

I saw this on twitter. I am shocked that the heel prick test does not include the screening for this as early detection is obviously key.

Organisations including muscular dystrophy uk have been pushing for newborns screening for a long time but it’s a slow process. Some info here and I’m sure Jesy will bring it more into the spotlight.

www.musculardystrophyuk.org/news/introduction-of-newborn-screening-for-spinal-muscular-atrophy/

I’m so upset for Jesy and Zion, I can’t imagine the absolute terror and devastation they have gone through and will continue to go through. Her poor beautiful baby girls, it’s heartbreaking. Like so many of you, this story has been on my mind all day.

This is incredibly sad for Jesy and Zion. It’s such a cruel illness.
Jesy’s video was brutally honest and articulate. She was so strong to get through it all. What a different life they will now be living. I hope they have a huge support network. Those poor little ones.

On twitter they are saying in other countries they check for around 30 conditions at birth including this but in the uk only 10. That’s dreadful if this could have lead to them being diagnosed and treated earlier.

I feel sick thinking about what they must be going through, so sad

Given that time is of the essence with this horrible illness, it shd definitely be on the 5 day heel prick panel in my opinion....not a fan but saw this earlier too. Poor little ones affected.

Have her bandmates reached out? Times like this transpire anything that has happened previously. Woman to woman, mother to mother you need that support.

Saw the video today.. followed her twin pregnancy journey, I have twins myself.. heartbreaking to see. Her strength is amazing though.

Hopefully if they do reach out, they’ll have the decency to do it privately. This isn’t an PR opportunity. She may not want people crawling out of the woodwork when shes going through something so difficult but it’s definitely her business and I think your comment is unhelpful and gossipy.

It’s a devastating diagnosis. Takes your breath away and they’re not my children. My best love goes to her.

And even then it might not be picked up till a baby is at the crawling /walking stage. My friend’s DC was full term & healthy, his mobility never went beyond pulling himself up on the furniture & he was diagnosed with SMA type 2 at around 18 months old. He never walked but lived to young adulthood. Such a devastating disease, I feel so sad for this family.

I’ve always had a soft spot for Jesy and was so pleased when her twins arrived. This is heartbreaking news. I hope the diagnosis and treatment has come early enough to give the girls a long and happy life.

I thought the same. She seems to have had a really tough time over several years.

Why isn’t SMA included in the heel prick test? Is it to do with cost?

As someone who has lived through the impact of a dc with a severe genetic condition, I can understand some of what their day to day life looks like and the feeling of becoming a nurse overnight. No one expects this when they have a baby. Life can be so cruel.

I had my little girl in September, so our pregnancies overlapped.

I followed Jesie's story on the Internet and was so pleased for her when her twin girls arrived safely

It is so sad that her lovely girls got this horrible diagnosis after the fight their mother had to go through.

Historically it wasn't because there were zero treatment options, so there was no justification for the cost of testing when it wouldn't make a difference to the outcome. Now there's a treatment option (and a time critical one at that) but it's new and the testing regime hasn't caught up. It's quite a big deal to add a new test given it's for every single baby born, and the miniscule numbers have meant it's not been high priority - but it should be.

Life is just so cruel and unfair at times - this family have been through enough already 😞

Ive always had a soft spot for Jesy, the Internet can turn so publicly on you and even when her twins were going through the wars during the pregnancy she was still receiving vitriol from idiots.

They have sat in my thoughts today. Ive too many sad thoughts sitting with me lately, seems to be a lot of sad news in the world at the moment.

What about the babies?! It's them with the horrific illness that I feel sorry for!

That poor couple. I know a bit about SMA as my ds2 was tested for it aged about 6 months old. He didn't have it thankfully and was eventually diagnosed with ehlers danlos syndrome.

I hope they have lots of support and can make lots of happy memories with their twins.

The story of poor little Charlie Gard really demonstrated how many people out there think it's somehow "kind" to give parents of sick children false hope.