A MOTHER desperate to get life-changing treatment for three-year-old Oliver has won her battle to get the medication offered on the NHS in the UK.

Irvana Davies, from Rochford is celebrating after a two-year campaign to get the NHS to fund Spinraza treatments for people living with spinal muscular atrophy (SMA).


Battler - Little Oliver


Family - Oliver is close with his siblings

The treatment was finally authorised this week.

SMA is a genetic muscle wasting condition.

Oliver developed signs of the condition shortly after he was born, and is a full time wheelchair user at age three.

He will never be able to walk.

The family were told he’d get weaker, lose the ability to swallow and eventually stop breathing on his own.

After seeing the success of the treatment in the US, Irvana believes it could stop the condition from worsening and hopes that as a result his muscles will begin to strengthen again, becoming strong enough to help with research for an even brighter future.

The 33-year-old mum said: “Finding out was the best day of my life.

“I’m honestly in a state of shock.

“As soon as it was announced I crumbled, me and mum just sobbed to each other on the phone, no words, just emotion.

“It’s devastating thinking of the life you envisioned for your child and the life they actually have. Oliver struggles to hold a glass of water and even a cough can be fatal.

“We’d see how others would benefit from the US, while we just watched Oliver deteriorate.

“We will celebrate May 15 every year, it marks the start of Oliver’s new life.”

In her fight, Irvana wrote to the chief executive of NHS England and joined hundreds in a protest outside the National Institute of Health and Care Excellence centre in Manchester, calling on them to allow the drug Spinraza to be introduced.

Irvana continued: “All this campaigning really was a team effort. Now we’ll be able to spend time as a family. My other kids Emilia, who is eight and Thomas, who is five, may now be able to actually play with Oliver.

“It’s quite isolating when you have a child with a disability, nobody really understands.

“The community support reminded me we were not alone.”

The appraisal committee at the National Institute of Health and Care Excellence, announced on Wednesday that Spinraza will be recommended as a standard treatment for all patients with SMA.