Jessy Nelson spoke about SMA this week

Singer Jessy Nelson announced this week that her twin daughters have been diagnosed with Spinal Muscular Atrophy (SMA) type 1, a muscle-weakening disease.

The former Little Mix star is now Campaigning for SMA testing for all babies at birthThis is a crucial time when irreversible damage to the nervous system can be prevented.

BBC reporter Ben Morris has SMA and tells us what it’s like to live with this disease.

Life got off to a bit of a rocky start for my family when, at about six months old, they realized I wasn’t developing at the same pace as my other newborn friends.

Other babies my age were kicking and crawling, but I was quite content to sit in my car and watch the world pass me by.

Concerned that something was wrong, my parents took me to the GP. Initially the doctor thought there was nothing wrong. After my parents ordered some tests, they sat me on the edge of the hospital bed in their office and left me.

I fell immediately and didn’t move my arms to save myself. The doctor caught me and said one word: “Oh.”

After further appointments, on October 15, 2001, a neurologist diagnosed me with SMA type 2. My mother and father were told that I would not live beyond the age of two.

The neurologist told my family he would see us again in the new year for a check-up. When we returned in early 2002, the neurologist once again saw me giggling and watching the world go by and said: “He’s a survivor.”

SMA severely affects the respiratory system; This means that colds and chest infections that develop in the winter can be life-threatening for babies with SMA.

My family were referred to a charity called the Jennifer Trust, now known as Spinal Muscular Atrophy UK, which supported me. I also made friends with others with SMA, sharing our common experiences and helping each other know that we were not alone.

Although doctors do not expect me to live past toddler age, I am now 25, working as a BBC correspondent and living independently with the help of personal care assistants.

I use an electric wheelchair to get around, which means I never have to stand on the subway during my commute, which is a win.

I have to use a respirator during the night when my breathing is shallower than during the day. This may sound scary to some people, but it’s completely normal for me.

I take Risdiplam every day, which keeps my condition stable. this is different Gene therapy drug Zolgensma approved by NHS in 2021 to treat babies – this can only be taken at an early age due to its effect on the kidneys.

Four things you need to know about Spinal Muscular Atrophy (SMA)

• Why? The NHS describes SMA as “a rare genetic condition that can cause muscle weakness and worsen over time”, but medications and other treatments are available to help manage symptoms. The NHS lists five types – with the second type, most people survive into adulthood
• How many people have it? NICE, the UK’s national institute for health and care excellence, says SMA affects an estimated one in 14,000 births worldwide. It is estimated that around 47 people will be born with SMA in the UK in 2023; 60% of them are type I SMA patients. According to NICE, between 683 and 1,366 people in the UK currently have SMA
• What are the treatments? Gene therapy for babies, through a drug called Zolgensma, helps repair part of the survival motor neuron (SMN) protein missing in SMA. It is not a cure, but it reduces muscle damage when given to newborns.
• What about testing? Scotland is starting to routinely screen babies for SMA from spring and the National Screening Committee is currently reviewing whether this method should be introduced to babies in the UK via a heel prick blood test.

In 2003, my sister Emily was born three years after me, and my parents were faced with the difficult task of caring for us both. He does not have SMA, but he may be a carrier of this condition because he has a potential faulty gene.

Emily has never treated me differently because I have SMA, although scoliosis surgery on my spine stopped me growing which means she is proud of the fact that she will always be taller than me.

My father worked as a project manager and used that mindset when dealing with the various support services I needed. He was able to get teams such as wheelchair services, physiotherapy, neurology and children’s services together in one room every three months, so they were working together rather than separately.

I went to a regular elementary school with a teacher’s assistant who would stay with me all day in case I needed help. This was not academic aid. Helped with accessing the curriculum. I took the same tests like everyone else, got yelled at when I didn’t do my homework, and socialized with my friends like everyone else.

This constant planning has followed me throughout my life and enabled me to do great things.

I raced on the track at the London Stadium as part of a test event for the 2012 Olympics, gave speeches to David Cameron’s wife Samantha and actor Eddie Redmayne at 10 Downing Street, and earned a degree in journalism from the University of Winchester.

Nelson’s twins may grow up to be stronger than me because treatment for babies has improved over the years. There are success stories of many people living with SMA, such as Kim Tserkezie, who plays the character Penny Pocket in the Balamory TV series, Paralympic athlete Sally Kidson and US Youtuber Shane Burcaw.

It’s great that Nelson discusses this, and I hope it’s possible to live a fulfilling life with SMA, as I’ve shown.