SMA: ‘I was completely ignored’ over baby’s rare spinal condition

Parents of babies born with a life-limiting, rare condition say their diagnoses came months too late, and after they had initially raised the alarm about their symptoms.

Lucian Neale was diagnosed with Spinal Muscular Atrophy (SMA) at six weeks old despite showing symptoms in his mother’s womb.

His mother Samantha Williams, from Crumlin near Pontypool, said she was “completely ignored” and told she was “an over-protective mum”.

Parents are speaking days after former Little Mix star Jesy Nelson revealed the twins she gave birth to prematurely last May have SMA, and will “probably never walk”.

According to SMA UK, an estimated 47 babies were born with the condition in the UK in 2024, although about one in 40 people carry the altered gene that can cause the disease.

The Welsh government said it followed advice from the UK National Screening Committee, which does not currently recommend routine newborn screening to detect SMA.