Disability advocate Sophie Morgan has criticised Cat Deeley for her ‘inappropriate’ choice of words while discussing Jesy Nelson’s twins’ diagnosis.
Former Little Mix star Jesy, 34, confirmed her twins with partner Zion Foster – eight-month-old daughters Ocean Jade and Story Monroe – had been diagnosed with the Spinal Muscular Atrophy (SMA1) last week.
Cat, 49, said on Thursday’s episode of This Morning that ‘disabled children can live normal lives’ if a screening process for SMA is put into place, while discussing Jesy Nelson’s twins’ condition.
Presenter Sophie, 40, who is paralysed, reshared a post from Guardian writer Frances Ryan, who is also disabled, which read: ‘I’m sure @catdeeley means nothing but kindness here but worth noting the kids “could have lived normal lives” is not an appropriate phrase.
‘Disabled children CAN have careers, marriages, mates. But they will face structural barriers to get them, as well as (sometimes) physical pain and suffering.
‘This is one reason why having disabled journalists in the media is crucial. There are four non-disabled people here discussing how disability affects lives (one of whom has spent years arguing to cut disability benefits).
Disability advocate Sophie Morgan has criticised Cat Deeley for her ‘inappropriate’ choice of words while discussing Jesy Nelson’s twins’ diagnosis of SMA on Thursday
Cat said ‘disabled children can live normal lives’ if a screening process for SMA is put into place as she and co-host Ben Shephard discussed Jesy’s campaign on This Morning
While Sophie and other disability advocates noted Cat meant well, they shared their frustration over her choice of language, (pictured with Jesy on Wednesday’s episode of This Morning)
‘Many people like Cat will mean well but you need people in the room who can bring nuance and knowledge that only comes with lived experience.’
Reposting the message to her Instagram, Sophie penned: ‘Spot on @frances.ryan85. We also need disabled people BEHIND the camera to make sure these on camera discussions are nuanced. It takes a team.’
Jesy had appeared on This Morning to draw attention to the United Kingdom’s failure to test for SMA1 (Spinal Muscular Atrophy Disease Type 1) at birth, a practice currently available in 45 countries across the world, including the United States.
The test costs just 36p and early treatment for Spinal Muscular Atrophy is crucial, with newborn screening enabling intervention before symptoms appear and dramatically improving outcomes like survival, sitting and walking.
Cat also said: ‘It was interesting Nick [Ferrari] because I was looking into it yesterday before we spoke to Jesy and it’s available in 43 countries around the world. It’s been available in the Unites States since 2023.
‘So for the sake of 36p, to me it seems ridiculous that we are not already doing this especially when time is of the essence and the treatment can be got so that the children can live normal lives’.
Former Little Mix star Jesy, 34, confirmed her twins with partner Zion Foster, eight-month-old daughters Ocean Jade and Story Monroe, had been diagnosed with the Spinal Muscular Atrophy (SMA)
Jesy (pictured after giving birth) with her twins and fiancé Zion Foster
Jesy has since been praised by the parents of other affected children across the UK by highlighting the issue during a recent appearance on ITV show This Morning, with many stunned by the affordability of SMA1 testing.
In one post, reshared by Nelson on her Instagram platform, follower Katie Hughes – the mother of a young boy living with the condition – called the revelation ‘devastating and shocking’.
She added: ’36p to change the course of a child’s life, it’s nothing really, is it? I was in tears when I watched that. I felt sick because 36p could have massively changed our little boy’s life.
‘And it would have changed so many little kids out there and their lives and what they go through on a daily basis. It angers me that we’re talking such a little amount, I didn’t realise it was that small.’
On Sunday, Jesy told social media followers that after ‘the most gruelling three or four months’ her daughters had been diagnosed with SMA1.
The disease causes progressive muscle weakness and wasting due to motor neuron loss, but they ‘could have saved their legs’ with early treatment.
During a subsequent appearance on This Morning she explained that because the diagnosis was not made at birth, Great Ormond Street doctors advised that her girls ‘are probably never going to be able to walk or regain their neck strength so they will be disabled’.
Speaking on the ITV show, she said: ‘The part that frustrates me the most I knew and saw all of the signs before I knew what SMA was.’
Health Secretary Wes Streeting has since admitted that Nelson was ‘right to challenge and criticise how long it takes to get a diagnosis’
Jesy and her partner Zion noticed symptoms such as their twins’ bowed legs and unusual breathing but were reassured by health visitors and GPs that as their babies were born premature they may be delayed in hitting certain milestones and not to compare their children to others.
She added: ‘I potentially could have saved their legs. I don’t think I’ll ever be able to get over or accept it. All I can do is try my best and make change.
‘It was weird because from when I was in NICU [Neonatal Intensive Care Unit], the way they used to lay on my chest, they would have frog leg position.
‘I did say to my mum, “Isn’t their belly an unusual shape?” They breathe from their belly.’
Sharing a video of one of the girls’ breathing, she admitted ‘that’s what frustrating – for me, if these were the cards I was always going to be dealt and there was nothing I could do about it, it would be easier for me to accept’.
‘But when you know there is something that can be done about it and it is life changing to your child, that’s the bit that I cannot accept,’ Jesy added.
‘When I took them home from NICU, the only thing I was really concerned about at that time was like checking their temperature, making sure they’re still breathing. I’m not checking to see if their legs are still moving…’
Health Secretary Wes Streeting has since admitted that Jesy was ‘right to challenge and criticise how long it takes to get a diagnosis’.
The Cabinet minister said he was ‘determined to look not just at screening for SMA, but to make much better use of genomic medicine’.
Newborn screening for SMA is not available in the UK, but Scotland has announced it will screen babies from the spring.
The UK National Screening Committee does not recommend screening but has commissioned work to reassess this due to developments in treatment.
Mr Streeting told ITV News: ‘My heart goes out to to Jesy Nelson and I think the way she has spoken about what must be an unimaginably frightening situation has been commendable, not least because there will be other parents who are going through what she is going through, who I think will relate very heavily to what she said.
‘She’s challenged us to go further on screening, and she is right to do so.’
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