WHEN the parents of young Edward Willis were told he may not see his third birthday, it felt like their world was collapsing around them.

Megan and John Willis’ son has severe spinal muscular atrophy – a condition which causes progressive muscle wasting.

Doctors told the parents their newborn could survive for a year or two but the debilitating condition would end his life prematurely.

Now aged two-and-a-half and thriving, it’s fair to say Edward, who began his early years in Colchester, has defied all odds.

Family - Megan, John and Edward Willis (Image: Megan Willis)

They say life is priceless, but a landmark £1.79 million investment might just have saved the youngster’s.

It followed months of campaigning from both Megan, 31, and John, 38, to see him prescribed the world’s most expensive drug.

They emerged victorious in their battle and Edward received the groundbreaking treatment aged 11-months.

The family travelled to Sheffield Children’s Hospital for the treatment in August last year.

They hope the drug will target the root cause of, and slow down the impact of, Edward’s rare condition.

With the youngster chirping away in the background as Megan speaks to the Gazette, it’s fair to say things are looking on the up.

“He has been doing really well, he is just incredible,” said his proud mum.

Brave - Edward Willis enjoying a trip out (Image: Megan Willis)

“He is learning to walk, can sit unaided, breathes and eats on his own and is talking now. The treatment has been really successful so far.

“We are just enjoying some normality now, the dust is settling and our new life is becoming normal.

“To be honest, things have been pretty mundane which I have to say has been nice.”

The memories of when life was uncertain remain painful to recall for Megan.

About 40 children are born with the most severe form of Edward’s disease each year and they rarely live past two-years-old if they do not receive the correct treatment.

Megan said: “Being given the news was devastating.

Best friends - young Edward at home (Image: Megan Willis)

“When you’re told your child only has a year or two to live it is soul destroying.”

But Edward’s fortunes changed when the lifeline drug became available on the NHS following months of trials, and he hasn’t looked back since.

“It was a lifechanging moment, for me and all my family. We were exhausted by the end so it was a sigh of relief that we could finally stop fighting,” said the 31-year-old.

“It has definitely been a rollercoaster. To know he has now got the chance of a normal life is an incredible thing.”

Edward now attends nursery three days a week in his wheelchair, and is proving popular among his peers.

The toddler’s condition only impacts his physical abilities, with his mental state unimpaired.

Baby on board - Megan and Edward on an outing on the train (Image: Megan Willis)

Megan said it still inspires her to see her son off as he arrives at nursery.

“Sometimes it’s a pinch me moment, that’s all you want for your child – for them to be happy.

“He is very funny and sweet, he’s the perfect child really. Everyone says how well behaved and gentle Edward is.”

While there is no timeline for how long a life the treatment will provide Edward with, every precious moment is a major victory for the family.

Their  son faced the bleakest of circumstances before his life had even got started and came out smiling.

“I wish I could go back to 2020 Megan and tell her ‘It’s going to be ok’,” added the mum.

“I’d say ‘it’s going to be hard, it’s going to be dark, but it’s going to be rewarding.’

“It has been a very crazy journey but has certainly made me a better mum.”

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