FRIENDS and family of a baby with a condition most children do not survive are embarking on a year of thrill-seeking challenges to boost his quality of life.

Bubbly baby Eric Woods, one, has only recently regained some movement in his legs and head.

He was born with type one spinal muscular atrophy, the most severe form of the genetic condition which causes progressive muscle weakness.

Since six months old he has been tube fed because he cannot swallow safely.

But despite the challenges he faces, a treatment programme has given Eric, of Colchester, a rare second chance.

Mum Mary Newell, 32, said: “Eric was accepted onto an extended access programme for a treatment called Spinraza, which involves injecting the drug into his spinal fluid.


Mary Newell poses for a selfie with son Eric Woods

“It slows down the progression of the condition by helping to strengthen the protein in the spinal motor neurone - SMN2 gene - which is the back-up to the SMN1 gene that babies with the condition are missing.

“But he will need it every four months for the rest of his life. Babies with SMA typically get worse over time until they are completely unable to breathe or move on their own.”

The youngster’s place on the Spinraza programme has been funded for life by the company behind it.

Mary said: “Without it, he would just continue to decline. With type one SMA, the normal life expectancy is two years.

“Most babies die within their first year without any treatment because of how it affects their breathing so they will suffer respiratory failure.

"It’s awful to think about.”

Already Mary and partner James Woods, 37, are seeing signs of improvement, with some of Eric’s paralysis being reversed on Spinraza.

But the pair have turned to an online fundraising campaign to help pay for private physiotherapy in the hope Eric will gain the strength to move by himself.

They hope to raise £13,000.


Eric has been tube fed since six months old 

Mary said: “Things are looking quite positive for him at the moment. He’s improving all the time.

“Eric is such a content, happy boy. Everyone falls in love with him because he has the biggest smile.

“We can’t even get around the supermarket without being stopped because he just smiles at everyone.”

In September, Mary is taking on a sponsored inflatable 5km course while this month, a friend is doing Dry January for Eric.

A hairdresser pal will donate all her month’s tips and friend of eight years, boxer Anthony Pacey, will take on a boxing match for the tot.

The Clacton dad, 29, will enter the ring with Dion Ratcliffe in April for a fundraising rematch at Clacton Town Hall.

He said: “If Eric’s fighting, I can, there’s no excuses. Eric has a bigger fight than me.

“My wife and I had our daughter a few months after Mary gave birth. Having a healthy baby has made me realise what I have versus what my friend is going through, which is horrible.”

He added: “I’m raring to go. I’m more mentally ready than I was before but I’m also nervous.”

Tickets go on sale next month via Essex Boxing Organisation.

Donate to Eric here.