'The Most Heartbreaking Time Of My Life': Jesy Nelson Opens Up About Twins' SMA Type 1 Diagnosis

Jesy Nelson is opening up about her twin daughters’ diagnosis of spinal muscular atrophy (SMA).

The genetic condition is characterised by weakness and wasting in the skeletal muscles, which causes severe problems with movement.

In a candid Instagram video, the singer said her mum previously noticed her daughters’ legs weren’t moving “as they should be”, but she hadn’t been too concerned as they were born prematurely and medical staff had mentioned they would develop at their own pace.

However when her twins, Ocean Jade and Story Monroe, began to struggle with feeding, they sought help and “after the most gruelling three, four months, and endless appointments, the girls have now been diagnosed with a severe muscle disease called SMA type 1”, the singer revealed.

What is SMA type 1?

SMA is usually grouped into types, based on the person’s age when the symptoms occur, and how they affect sitting, standing and walking. 

SMA type 1, also known as Werdnig-Hoffman disease, usually occurs in babies less than six months old.

Per the NHS, symptoms can include:

• muscle weakness – such as floppy or weak arms and legs
• movement problems – such as difficulty sitting up, crawling or walking
• problems with breathing or swallowing
• twitching or shaking muscles (tremors)
• bone and joint problems – such as an unusually curved spine (scoliosis)

The former Little Mix member said the condition can affect “every muscle in the body down to legs, arms, breathing, swallowing and, essentially what it does is, over time it kills the muscles in the body, and if it’s not treated in time, your baby’s life expectancy will not make it past the age of two”.

Holding back tears, she explained the twins had received treatment, and that she and her partner, the twins’ father Zion Foster, had been told by doctors their girls are “probably never going to be able to walk, they’ll probably never regain their neck strength, so they will be disabled”.

She continued: “The best thing we can do right now is to get them treatment and then just hope for the best.”

How is SMA type 1 treated?

There is sadly no cure for SMA, only treatment. 

The twins have now had treatment, Jesy said, although it’s likely they will need continuous medical support over the years. The parent, who gave birth to her twins in May last year, noted she’s already attended “endless hospital appointments” and feels like she’s had to “become a nurse”, as she’s having to operate machines to help them breathe. 

Advances in treatments in the past few years mean almost three in four babies born with SMA in the UK are surviving for two or more years.

One treatment, nusinersen, targets the underlying cause of SMA and has been shown to lead to “clinically meaningful improvements in muscle function”.

Another one-off gene therapy might also be offered to deliver a new working gene to the recipient’s motor neurons. According to the US-based National Institute of Neurological Disorders and Stroke, this particular treatment has been shown to improve muscle movement, function, and survival.

There is also risdiplam, another drug which targets a ‘back up’ motor neuron gene to produce more of a specific protein in the body – this is important because people who have SMA don’t have enough of a protein called ‘survival motor neuron protein’, says the charity Spinal Muscular Atrophy UK.

In her video, Jesy said the last few months have been “the most heartbreaking time of my life”.

“I literally feel like my whole life has done a 360, I almost feel like I’m grieving a life that I thought I was going to have with my children, and I have to be grateful because at the end of the day, they’re still here, and that’s the main thing, and they’ve had their treatment,” she said. 

“And I truly believe that my girls will defy all the odds and, with the right help, they will fight this and go on to do things that have never been done.”

She said she wanted to raise awareness of the condition and urged anyone noticing signs of SMA in their babies or children to seek medical help as soon as possible, “because time is of the essence, and your child will need treatment – and the quicker you get this, the better their life will be”.