‘We need early tests for babies with same condition as Jesy Nelson’s twins’

A mother whose son was diagnosed with spinal muscular atrophy (SMA) when he was ten days old has urged singer Jesy Nelson to “take all the help she can get” for the condition.

The former Little Mix star revealed that her twin baby daughters have the condition and said she has been told they may never walk.

SMA is a progressive muscle-wasting disease that can cause death within two years if untreated.

Kayleigh, from Holmfirth in West Yorkshire, said her son Oscar uses a wheelchair but goes to nursery and can talk thanks to early intervention. She is calling for babies to be screened for the condition.

When Oscar was just over three weeks old he received a £1.8m single dose of gene therapy Zolgensma – the most expensive drug in the world.

But before the drug was made available, children with this SMA Type 1 typically survived less than two years, according to the NHS.

Now aged three, Oscar loves cars, singing, playing with his sister Edie and little brother Finn, and Paw Patrol.

But Kayleigh said he needs a feeding tube, other equipment to assist his breathing and lung function, and a frame to stand up.

Kayleigh, 38, also said as her son gets bigger the family will have to “fund significant house adaptations”.

She said early diagnosis of the condition, through a heel-prick blood test that can be used to pick up SMA Type 1, was key.

“If it wasn’t for the medical staff at the hospital, who we are very grateful to, we would have taken Oscar home and watched him decline even further – which is the experience of many families,” she said.

“And he has gone on to start speaking, which is something we were not sure would happen.”

Jesy Nelson said she realised something was not right with her daughters when she noticed they had not been showing as much movement in their legs as they should be, and were struggling to feed properly.

After months of medical appointments it was confirmed her daughters, Ocean Jade and Story Monroe, both had SMA Type 1. Nelson has said she has a “duty of care to raise awareness” about the condition.

Kayleigh said: “My heart goes out to Jesy. It is a huge shock when your child is diagnosed and all your hopes and expectations for them and your life with them change in an instant.

“I initially felt very low as my life became a whirlwind of scheduling appointments, advocating for his needs and feeling isolated by the sheer number of tasks and limited support in managing this, while also dealing with the emotions of being told that your child has a life-limiting condition.”

There is currently no cure for SMA, but drugs and therapies are used to help manage the condition and improve strength and flexibility.

Kayleigh said the SMA community was pushing for the “non-invasive and inexpensive test” heel-prick test to be carried out on babies at an early age to enable earlier diagnosis.

“Almost all children who are treated at birth have a higher chance of leading typical, independent lives and to achieve their motor milestones,” she said.

The NHS has introduced three new treatments for SMA since 2019, a spokesperson said.

They said this had helped “more than 140 children with severe SMA to receive a one-shot treatment – but we are determined to make this process as quick as possible for all children and their families”.

They added: “The NHS Generation Study is also evaluating whether genomic sequencing could be adopted more widely as part of standard newborn screening in the NHS, including testing for SMA.”

Kayleigh said she recognised that Oscar would always have disabilities and she felt “so proud” of him.

“And I am really proud of us because it is a lot to deal with and you just have to adapt,” she said.

“So what I would say to Jesy is that there is no right or wrong way to feel but also take all the help that is there – just take it all because you can give it back.”