Babies are given gene and drug therapy very quickly if it is diagnosed early, and the outcomes are much much better if no muscle tone is lost. They will always have the condition however, which is degenerative and need medical care for their whole lives. There is no cure.
Jesy Nelson #7 same old same old…
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I’m not sure what genetic carrier screening is in practical terms in the States, but presumably that’s something carried out before getting pregnant, and so only given to those that ask and pay for it. Equally, the NIPT blood test or amniocentesis isn’t routinely done, only on request or when problems are detected with the baby which warrants further tests.
Jesy is campaigning for newborn screening which would diagnose all cases of SMA at birth and allow for fast treatment and better outcomes.
Equally, as this is a condition that requires both parents to carry the gene, it's really sensible to have genetic testing done pre-pregnancy. My daughter's friend has just got married and her husband has got cystic fibrosis. They're just going through genetic testing to make sure that she doesn't carry the gene.
The problem is, you don’t know what you don’t know. It’s likely that we all unknowingly carry a gene for some sort of recessive genetic condition. Should we all be getting ourselves a full genetic screen before having a baby?
Not to mention that a large percentage of pregnancies are unplanned, as Jesy’s was IIRC.
It’s not really the same thing as knowing you carry a gene for a particular genetic condition, because you actually live with that condition. Of course in that scenario, the sensible thing is to check that your partner doesn’t carry the gene also.
Yes I agree I think that does make a difference if you know you carry it. My cousin has 3 kids, first baby had no issues, 2nd one had a really rare genetic disorder and wasn’t picked up on at all while she was pregnant, she was born perfectly healthy and fine as far as they where aware it’s when she wasn’t hitting milestones etc they started getting her checked out and she had a variety of different issues but her main issue was a rare genetic condition. I can’t remember the name of it but she was told she most likely wouldn’t see her 5th birthday she unfortunately passed away at the age of 2 but then she went on to have another baby and she’s no issues at all. They did keep a closer eye and do various tests for this 3rd baby due to what happened with the 2nd, but just goes to show you just don’t know and just because 1 has issues doesn’t mean the other ones will.
Info about her next documentary, likely to be on streaming later in the year.
Why so many documentaries? Tbf, I don't know if she's done one purely focusing on the babies so if not I can understand but it's a bit weird to. me that she makes so many.
I suppose there’s no work coming in for her so she’s best taking it. I mean the career didn’t work out .
A multipart TV series would make more sense for her but I suppose the drip feeding is more lucrative. And her docs always do well and get accolades so she has an audience.
I'm not remotely comfortable with the use of two profoundly disabled children like this. Yes the money will help care for them, but there are other ways. It just doesn't sit easily that their lives are being made so public for money 
It's not about the twins though, she's an opportunist.
Firmly embedded in a mediocre online life so will use anything as a means to earn money and put her warpaint on for those very important sultry selfies.
Firmly embedded in a mediocre online life so will use anything as a means to earn money and put her warpaint on for those very important sultry selfies.
I do have to agree with this unfortunately
she would’ve exploited her children regardless and she had already signed up to film them and do documentaries before even knowing they would have health problems.
Her career is finished, so I also agree. I still wonder why she left Little Mix when she did, as apparently the hiatus was already planned at that point.I do have to agree with this unfortunately
Good god where has the time gone, how are they already one?!
I also agree.I do have to agree with this unfortunately
It's all about her and the high she gets from having something she can use for 24/7 content. I think she's got a terrible social media addiction and wouldn't be able to put her phone down if her life depended on it. I feel sorry for the babies, they can't consent to having their image plastered around and as much as one can praise Jesy for raising awareness, she could do that without exploiting her own children like this.
Such beautiful little girls. It's heartbreaking to think of how much they will struggle 
That video made me feel so sad for those children, every moment of their lives is an opportunity for Jesy to be in the spotlight.
I think Jesy’s recent public presence has been as a content creator. Her babies will grow up without privacy which is a bit sad.
It’s very heartbreaking they h an avoidable condition and Jesy highlighting that is applaudable.
I hope their dad is in their lives.
It’s gonna be challenging being a single mum of two handicapped children, maybe that’s what’s motivating Jesy to create content with them in and garner finance?
It’s very heartbreaking they h an avoidable condition and Jesy highlighting that is applaudable.
I hope their dad is in their lives.
It’s gonna be challenging being a single mum of two handicapped children, maybe that’s what’s motivating Jesy to create content with them in and garner finance?