The Daily Populous Sunday January 11st, 2026 night edition
Authored by bbc.com and submitted by Strongbow85

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

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Former Little Mix star Jesy Nelson revealed this week that her twin daughters have been diagnosed with Spinal Muscular Atrophy (SMA) type one, a muscle-weakening disease. 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 peers. Other babies my age were kicking and some had started 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."

WireImage via Getty Images Jesy Nelson is calling for babies to get routine screening for SMA at birth

After further appointments, on 15 October 2001 I was diagnosed 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. SMA severely impacts the respiratory system, meaning colds and chest infections developed in the winter can potentially be life threatening for babies with it. But when we returned in early 2002, the neurologist remarked: "He's a survivor." My family were signposted to a charity now known as Spinal Muscular Atrophy UK, (SMA 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.

Spinal Muscular Atrophy (SMA) What is it? The NHS describes SMA as "a rare genetic condition that can cause muscle weakness". The NHS lists five types - with type two most people survive into adulthood

The NHS describes SMA as "a rare genetic condition that can cause muscle weakness". The NHS lists five types - with type two most people survive into adulthood How many people have it? The National Institute for Health and Care Excellence (NICE) says SMA affects about 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

The National Institute for Health and Care Excellence (NICE) says SMA affects about 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. According to SMA UK, the drug delivers a healthy copy of the affected gene to the body, but timing is critical because irreversible damage may have already occurred in the nervous system

Gene therapy for babies, through a drug called Zolgensma. According to SMA UK, the drug delivers a healthy copy of the affected gene to the body, but timing is critical because irreversible damage may have already occurred in the nervous system What about testing? Scotland will 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. About one in 40 people carry the altered gene that can cause the disease, according to SMA UK. 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.

Ben Morris gained a journalism degree from the University of Winchester

nabiku on January 10th, 2026 at 21:39 UTC »

Anti-science trolls take posts like these and share them as "evidence" that doctors are quacks.

Doctors rely on statistics to give a prognosis. This guy lived, but 100 others didn't. But because people who beat the odds love sharing their stories, it "feels" like everywhere you click, there's posts about doctors getting it wrong.

Going forward, please educate people on how odds work whenever you share your story. Terminology like "I'm the lucky 1 out of a 100" is usually enough.

IronColdSky on January 10th, 2026 at 18:50 UTC »

Fantastic!!

MorsaTamalera on January 10th, 2026 at 16:08 UTC »

So you skipped that birthday? Good thinking, mate.