Facing a life-altering diagnosis at a young age is a challenge few can comprehend, but what if you were told you might not live past your second birthday? This was the reality for Ben Morris, a BBC journalist living with Spinal Muscular Atrophy (SMA). Now, at 25, he's not only defying the odds but thriving, offering a powerful message of hope and resilience.
Recently, singer Jessy Nelson brought SMA into the spotlight, revealing her twin daughters have been diagnosed with SMA type one. This has sparked a campaign for universal SMA testing for newborns, a critical step to prevent irreversible damage to the nervous system.
Ben's story begins with his parents noticing a developmental difference at around six months old. While other babies were kicking and crawling, he was content observing the world from his buggy. After a visit to the doctor and some tests, he received the life-changing diagnosis of SMA type two at the age of six months. Doctors initially predicted he wouldn't live past two years old.
But here's where it gets controversial... SMA can severely impact the respiratory system, making common colds and chest infections potentially life-threatening for those affected. Ben's family found support through the Jennifer Trust (now SMA UK), and he's built a community with others who share his experiences.
Despite the early prognosis, Ben is now a successful BBC journalist, living independently with the assistance of personal care assistants. He navigates the world using an electric wheelchair and relies on a ventilator overnight when his breathing is more shallow. He also takes a daily medication, Risdiplam, to keep his condition stable. It's important to note that this is different from Zolgensma, a gene therapy approved in 2021 that can only be administered at an early age.
Let's break down the key facts about SMA:
- What is it? SMA is a rare genetic condition causing muscle weakness that worsens over time. The NHS recognizes five types, with type two allowing most people to survive into adulthood.
- How common is it? SMA affects roughly 1 in 14,000 births worldwide. In the UK, it's estimated that about 47 babies were born with SMA in 2023, with 60% having type one. There are between 683 and 1,366 people living with SMA in the UK.
- What are the treatments? Gene therapy, like Zolgensma, aims to restore the missing survival motor neuron (SMN) protein. While not a cure, it can reduce muscle damage if given early.
- What about testing? Scotland is starting to routinely screen babies for SMA, and the National Screening Committee is reviewing introducing it across the UK.
Ben's sister, Emily, was born three years later and doesn't have SMA, but may be a carrier. This highlights the genetic complexities of the condition.
Ben's father's project management skills proved invaluable in coordinating the various support services Ben needed. He ensured that teams such as wheelchair services, physiotherapy, and neurology worked together.
Ben attended a mainstream primary school with a dedicated teaching assistant, emphasizing his integration into a typical childhood. This consistent planning has allowed him to achieve incredible things, including racing at the London Stadium, giving talks at 10 Downing Street, and earning a journalism degree.
And this is the part most people miss... The advancements in treatment for babies today offer even greater hope. Ben's story, along with the successes of others like Kim Tserkezie, Paralympian Sally Kidson, and US Youtuber Shane Burcaw, proves that a fulfilling life with SMA is possible.
It's inspiring to see Jessy Nelson raising awareness, and Ben's story is a testament to the resilience of the human spirit.
What are your thoughts on early screening for SMA? Do you think the advancements in treatment are promising? Share your opinions in the comments below!
