SMA explained: Reflecting on Jesy Nelson's news

5 January 2026

Yesterday, Sunday 4 January 2026, former Little Mix singer Jesy Nelson shared the news that her twin daughters Ocean and Story have been diagnosed with spinal muscular atrophy (SMA) type 1.

Our thoughts are with Jesy, Zion and their family at this difficult time. 

We understand that receiving a diagnosis like this can be devastating and would like to thank Jesy for sharing her story so bravely – helping to raise awareness of SMA and other muscle wasting conditions as well as the importance of newborn screening.  

At times like this, there is a lot of information circulating across different media outlets which can be confusing. If you have recently received a diagnosis or are living with a muscle wasting condition and have been affected by the news shared by Jesy, please don’t hesitate to get in touch. 

There are over 60 different muscle wasting and weakening conditions, and the symptoms and the age at which symptoms occur vary. Spinal muscular atrophy (SMA) is one of these conditions and recent studies indicate that approximately one in every 10,000 babies worldwide are born with a type of SMA.  
 

What is SMA?  

Spinal muscular atrophy (SMA) is a rare genetic condition that causes muscles to weaken and waste over time. It can affect the ability to crawl and walk, and affect arm, hand, head and neck movements. It can also impact breathing and swallowing.  

SMA is classified into types based on when symptoms appear and how severe they are. Symptoms of SMA type 1 typically appear within a child’s first six months, and this type is the most common and severe. 

Symptoms of SMA type 1: 

• Present as a ‘floppy baby’ due to low muscle tone and severe muscle weakness
• May be unable to raise their head because of weak neck muscles
• Unable to sit without support because of weak core muscles
• May have difficulty moving, breathing and swallowing
• At a higher risk of respiratory issues and chest infections

Currently there is no cure for SMA but thanks to research, treatment has advanced significantly, and therapies are available to manage symptoms and slow progression.  
 

What difference could newborn screening for SMA make? 

We know that newborn screening is the fastest and most effective route to a diagnosis of SMA, where early treatment is vital to minimising the impact of the condition and helping children grow up without complex needs. 

Early diagnosis and treatment will not only improve the quality of life for babies and families affected by SMA, but it will also provide long-term NHS cost savings. 

Right now, in the UK, some babies born with SMA who aren’t treated until after symptoms start are still dying. Babies who do survive can’t walk, and the majority are reliant on tube feeding and ventilation support. But it doesn’t have to be this way.  
 

Is newborn screening for SMA currently available in the UK? 

No. The existing NHS newborn blood spot test (formerly called the heel prick test) screens for ten conditions, including cystic fibrosis and sickle cell disease, but not SMA or any other muscle wasting condition. Most babies are healthy and won’t have any of these conditions. But for those who do, the benefits of screening can be lifesaving.  

A major milestone was reached last year and on 5 September 2025, the Scottish Government announced that Scotland will become the first country in the UK to begin national screening for SMA. From this spring, parents in Scotland will be offered SMA screening for their newborn babies through the existing NHS blood spot test. 

This is a significant and positive step, and we need the rest of the UK to follow at the earliest opportunity, to ensure newborn screening for SMA is available everywhere.  
 

What are we doing? 

As a charity, we’ve long called for SMA to be added to the newborn screening list as the UK continues to fall behind the growing number of countries screening for SMA at birth. Newborn screening for SMA is widely available in the USA and Canada and across Europe 75% of babies are screened at birth. The longer it takes for newborn screening to be available, the more babies will be diagnosed too late. 

We know that in countries where SMA newborn screening is in place, babies diagnosed and treated through newborn screening survive, can walk, and aren’t reliant on ventilation support or tube feeding.  

We’re delighted that babies in Scotland will be screened from this spring but it’s crucial that newborn screening for SMA is available everywhere.  

We will continue to work with partners, particularly the charity SMA UK, to speed up the introduction of newborn screening for SMA in other parts of the UK. 

Watch Jesy’s first TV interview about her twin daughters’ diagnosis, and hear from our Research Vice President Professor Francesco Muntoni