Jesy Nelson has made a tearful plea to the UK’s Health Secretary after her daughters were diagnosed with SMA.
Jesy Nelson has made a tearful plea
The Little Mix singer has been candid with fans after her eight-month-old twin girls, Ocean and Storm, were diagnosed with SMA1 (Spinal Muscular Atrophy Type 1) – the most severe form of the rare, progressive, non-reversible, muscle-weakening genetic condition.
On Tuesday’s (20.01.26) episode of ITV show This Morning, Jesy met with politician Wes Streeting to call for greater screening and treatment.
She tearfully told him: “When you see it in real life and you see the severity of how lifechanging it is, it’s literally a case of your child could walk or your child will be in a wheelchair.
“I feel so passionately about trying to raise awareness about this and get it to change, because I feel like no parent should have to go through this.”
She pointed out that “so many families” will be going through the same experience she is, which “doesn’t need to be happening”.
She added: “We need to change the way babies are being screened in the UK for SMA, and right now, the system just isn’t working.
“Early treatment is everything. My girls were diagnosed at six months old, but by then, the damage had already set in.”
Streeting praised the 34-year-old pop star for raising awareness of the issue, while highlighting a “live evaluation” which is ongoing.
He warned that it could take two years for that to conclude, but he wants to speed the process up.
He said: “I feel hopeful that because this evaluation study is already set up and designed to start, for me the question – I’ve got two things I really want to go away and drill into.
“One is, can it start sooner? And secondly – when it’s up and running, it’s only going to screen two thirds. Can we go further?”
