THE parents of a two-year-old girl from Oxfordshire diagnosed with a rare genetic condition say they feel like 'they've won the lottery' after NHS bosses approved funding for a life-changing drug.

Little Esme Needham-Swell cannot stand, sit-up or eat without assistance and requires 24-hour care as a result of the rare muscle wasting disorder SMA type 2 (spinal muscular atrophy).

Parents, Stacey Swell and James Needham, admit they had lost hope that their daughter may ever live any sort of normal life after the NHS refused to fund the drug Nusinersen, also called Spinraza, in August last year.

Oxford Mail:

Esme Needham Swell, 2, with brother Kyle, 8, taken last August.

However, after a two-year battle to have the 'wonder drug' approved on the NHS, the family were overjoyed this week when health bosses made an about turn on the treatment.

Ms Swell, 34, from Banbury said: "I feel like we’ve won the lottery. When she was two years old, we were told we would be burying our child – that’s just gone now.

Read again: Banbury family fight for access to SMA drug to help daughter Esme

"Our daughter will be given access to a life-saving and life-changing drug - I just don’t have any words.

"We have been fighting for it for a long, long time, we've been to protests outside the National Institute of Health and Care Excellence (NICE) and now, we can see light at the end of the tunnel and it's going to make such a difference to our lives."

SMA affects the nerves in the spinal cord, making muscles weaker and causing problems with movement, breathing and swallowing.

Where it develops in babies and toddlers, it can significantly reduce life expectancy.

Nusinersen is the first treatment that targets the underlying cause of the condition and, after initially stating the drug was two expensive, NHS England said on Wednesday it had successfully negotiated a deal with pharma giant Biogen.

Mr Needham, 38, said: “I was overcome with emotion when I heard.

“It means for Esme she will be getting the best possible quality of life. It gives her the best chance of life.

“It means she will be able to eat unaided, brush her own hair and, and, please God, one day walk unaided.”

Also read: Oxford Community Hospital to close amid NHS staffing crisis

The news has not been lost on Esme either with Ms Swell adding: "Esme had been asking me recently 'when will I be able to walk?'. I always replied 'not yet but you will do one day'. Then on Wednesday I told her she'll be getting her special medicine, and asked if she knew what that means and she said 'it will help me walk'."

Oxford Mail:

The family said they had given up hope after NHS chiefs refused funding for the drug last year

The drug which is injected directly into the spine and is a lifelong treatment, will first be made available to the youngest and most severely-affected (SMA type 1) patients immediately, while the NHS will begin to provide Nusinursen to older babies, children and young adults with less severe symptoms (SMA types 2 and 3) shortly after NICE’s guidance is published.

With Esme being one of the only children in Oxford to have the conditions she is expected to be among the first to receive the treatment at the John Radcliffe Hospital.

Between 600 and 1,200 people are currently living with the condition in the country.