A FAMILY is campaigning for the NHS to sanction a treatment for a three-year-old’s life-limiting spinal condition.

Three-year-old Oliver Davies lives with Spinal Muscular Atrophy (SMA), a rare genetic muscle wasting condition.

It affects the nervous system which controls voluntary muscle movement and makes the muscles weaker over time and causes delay with movement.

Oliver lives in Rochford and is due to start at Ashington Primary School in September, and his family have joined a nationwide campaign for NHS England to allow a treatment for SMA to be made available.

It works by slowing a patient’s muscle wastage and making it easier for them to move.

His mum Irvana Davies, 33, will today join hundreds of other families in a protest in Manchester outside the National Institute of Health and Care Excellence centre calling on them to allow the drug Spinraza to be introduced.

The drug was first approved in the United States in December 2016, and in the EU in May 2017, but is not allowed in the UK.

Mrs Davies said: “In order to live life to its full potential Oliver requires various items of equipment including a powered wheelchair and standing frame amongst others.

“Physiotherapy, horse riding, hydrotherapy are also extremely beneficial in maintaining muscle strength but unfortunately are very limited on the NHS so we are self-funding the majority of additional help Oliver needs.

“SMA is a purely physical condition, so Oliver is fully aware of how limited his body is. He’s super smart, is very active, but he will know he can’t move as well as people around him.

“This will impact him when growing up; it will be a challenge to deal with, which is why we need to give him and others with SMA the opportunity to be treated."

Oliver’s family have also started a fundraising page to pay for a new powered wheelchair to help him get around.

At the moment he uses a “wizzybig” powered chair to move around but is outgrowing it.

They have so far raised more than £2,000 of their £5,000 target.

Mrs Davies added: “Whilst there are of course such items available on the NHS Oliver’s condition is deemed “rare” and because of this there are very few chairs which meet his needs fully and unfortunately those that do are not available via the NHS.”

To donate, visit www.justgiving.com/crowdfunding/oliverdavies1.

NHS England were contacted for comment.