Doctors said I might not make my second birthday with muscle disease SMA. Now I'm 25

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

The former Little Mix star is now campaigning for all babies to be tested for SMA at birth, a crucial time when irreversible damage to the nervous system can be prevented.

BBC journalist Ben Morris has SMA and describes what it is like to live with the condition.

Life started with a bit of a bump for my parents when they noticed that I, aged about six months, wasn't developing at the same rate as my other newborn friends.

Other babies my age were kicking and crawling, but I was quite content sitting in my buggy, watching the world pass me by.

Worried something wasn't quite right my parents took me to the GP. Initially the doctor thought there was nothing wrong. After my parents requested some tests, he sat me on the side of the medical bed in his office and let go.

I immediately fell over and did not move my arms to save myself. The doctor caught me and said one word: "Oh."

After further appointments, on 15 October 2001 a neurologist diagnosed me with SMA type two. My parents were told I may not live beyond two years old.

The neurologist told my parents 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 pass by, and remarked: "He's a survivor."

SMA severely impacts the respiratory system, meaning colds and chest infections developed in the winter can potentially be life threatening for babies with it.

My family were signposted to a charity called the Jennifer Trust, now known as Spinal Muscular Atrophy UK, which helped support me. I've also befriended others who have SMA, sharing our common experiences and helping each other know we're not alone.

Despite doctors not expecting me to live beyond a toddler, I'm now 25, working as a BBC journalist and living independently with the help of personal care assistants.

I use an electric wheelchair to get around, meaning I never have to stand up on the Tube when commuting which is a win.

I have to use a ventilator overnight, when my breathing is more shallow than during the day. That might sound scary to some people, but for me it's completely normal.

I take a daily drug called Risdiplam, which keeps my condition stable. It's different to Zolgensma, the gene therapy drug approved by the NHS in 2021 to treat babies - this can only be taken at an early age because of its impact on the kidneys.

Four things to know about Spinal Muscular Atrophy (SMA)

• What is it? The NHS describes SMA as "a rare genetic condition that can cause muscle weakness" which worsens over time, but there are medicines and other treatments to help manage the symptoms. The NHS lists five types - with type two most people survive into adulthood
• How many people have it? NICE, the national institute for health and care excellence in the UK, says SMA affects an estimated one in 14,000 births worldwide. It is estimated about 47 people were born with SMA in the UK in 2023, 60% with type one. Between 683 and 1,366 people currently have SMA in the UK, according to NICE
• What are the treatments? Gene therapy for babies, through a drug called Zolgensma, helps to restore some of the survival motor neuron (SMN) protein that is missing in SMA. It's not a cure, but reduces muscle damage if given to newborns.
• What about testing? Scotland is starting to routinely screen babies for SMA from the spring, and the National Screening Committee is currently reviewing whether to introduce it for babies across the UK via a heel prick blood test

In 2003, my sister Emily was born, three years after me, and my parents had the difficult task of looking after us both. She doesn't have SMA, but may be a carrier of the condition with a potential faulty gene.

Emily has never treated me any differently because I have SMA, though an operation I had on my spine for scoliosis which stopped me from growing, means she does take pride in the fact she'll always be taller than me.

My dad worked as a project manager, and he used that mindset when dealing with the various support services I needed. He managed to get teams such as wheelchair services, physiotherapy, neurology and children's services all in a room every three months so they were working together, not separately.

I went to a mainstream primary school, with a teaching assistant who would stay with me all day, just in case I needed help. This wasn't academic help. It was help to access the curriculum. I did all the same tests as everyone else, got told off when I didn't do my homework, and socialised with my friends like anyone else.

This continuous planning has followed me throughout my life, and has allowed me to do some amazing things.

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

Nelson's twins may well grow up to be stronger than I am, as treatment for babies has advanced over the years. There have been many success stories of people living with SMA, such as Kim Tserkezie, who played Penny Pocket in the Balamory TV series, Paralympian Sally Kidson and US Youtuber Shane Burcaw, to name a few.

It's great Nelson is discussing this, and hopefully as I am showing, living a fulfilled life with SMA is possible.