Jesy spoke out to highlight the UK’s lack of routine newborn screening for Spinal Muscular Atrophy
SOPHIE Morgan has spoken out after Cat Deeley came under fire for what campaigners have branded “inappropriate” wording while discussing Jesy Nelson’s twins’ heartbreaking diagnosis on This Morning.
Jesy, 34, recently revealed that her eight-month-old daughters Ocean Jade and Story Monroe — whom she shares with partner Zion Foster — have been diagnosed with Spinal Muscular Atrophy (SMA), the most severe form of a rare muscle-wasting condition that may leave them unable to walk.
Following the emotional interview with Cat, 49, disability activist Sophie, 40, reshared a post criticising the presenter’s phrasing.
The message, originally posted by Guardian writer Frances Ryan, 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).
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.”
Backing the post, Sophie — who is paralysed — added:
“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 fact that the UK still does not offer routine newborn screening for SMA — despite the test costing just 36p and allowing babies to access vital early treatment before symptoms develop.
After the interview, Cat 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 United 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.”
An emotional Jesy then shared further details about her daughters’ battle, saying:
“They had their treatment, thank God — a one-off infusion. That puts the gene back in their body that they don’t have. It stops the muscles still working from dying.
Any that have gone, you can’t regain them back. Now it’s down to constant physio. We’ve been told they’ll probably never walk or regain their neck strength. They’ll probably be in wheelchairs.”
Source: https://www.dailymail.co.uk/
