// BBC UK NEWS — CRONACA
Parents fear being left behind in screening for rare condition after Jesy Nelson campaign
Three-year-old Ophelia-May predominately uses a wheelchair after being diagnosed with SMA type 2 last year
Parents of children with a rare genetic condition say they fear Wales is being left behind as other parts of the UK introduce routine screening for newborns.
After widespread campaigning, including by former Little Mix star Jesy Nelson, testing for spinal muscular atrophy (SMA) will happen in England and be trialled in Scotland but not in Wales.
Warren Davies, whose three-year-old daughter Ophelia-May has SMA type 2, external, said it felt like the Welsh government was "playing god because they have the opportunity to effect change and they are choosing not to".
The Welsh government said it had followed UK National Screening Committee (NSC) guidance that had not recommended routine newborn screening for SMA.
Newborn screening for SMA is also not in place in Northern Ireland, external.
Ophelia's parents say they began to notice "physical delays" when she was six months old, but were told she would "catch up"
SMA causes muscle weakness and gets progressively worse over time - there is no cure, but there are medicines and other treatments to manage the symptoms.
There are several types of the condition, and it affects everyone differently, with life expectancy varying from person to person.
Most types are caused by an altered gene being passed to a child by their parents and blood tests can be used to confirm a diagnosis.