THE parents of a boy who has a muscle-wasting condition are set to join other families in a protest against a decision to not approve treatment on the NHS.

Dominic and Tammy Wright’s world came crashing down when their son, Leyton, was diagnosed with spinal muscular atrophy (SMA) when he was a baby.

Leyton, now six, has battled with the incurable condition and has never been able to walk independently and uses a special adapted wheelchair to move around.

The family, who live in Milking Lane, Lower Darwen, were left devastated after the National Institute for Health Care Excellence (NICE) ruled the drug spinraza, used in the USA and Europe, too expensive to use on the NHS. There were also doubts about its long-term effectiveness.

Mr Wright, 28, and his wife have joined campaign group TreatSMA and will take part in a protest against the decision today outside NICE’s headquarters at City Tower in Piccadilly, Manchester.

Mr Wright said if his son could have access to the drug, also known as nusinersen, it may help him maintain his current strength.

He said: “As a parent you would do anything in your power for your kids, but this is out of our hands so we need to make the decision makers fully understand the consequences of their decisions.

“SMA is the biggest genetic killer of children under two years old – it affects the muscles and respiratory system.

“As a result of this, Leyton has never walked nor crawled, and we’re slowly starting to see him lose other abilities such as raising his arms above his head.

“It has already affected Leyton’s respiratory muscles resulting in him being hospitalised four times with collapsed lungs.

“Without spinraza Leyton will lose more strength and as a father that’s disheartening to witness.”

Each dose of spinraza costs £75,000 and four are required in the first few months of treatment with regular follow-up doses every four months.

Speaking to the Lancashire Telegraph last year, Mr Wright said NICE’s decision to not approve the drug felt like a kick in the teeth.

He said this drug was the only treatment that had an effect on his son’s condition.

The protest is set to take place at around 12pm today as an appraisal meeting on spinraza will take place inside NICE’s HQ.