‘My son was born with 2 percent of his brain – I was told to end his life five times’

Noah Wall, 10, lives near Wigton in Cumbria with his 50-year-old mum, Shelly, and dad Rob, 57.

I couldn’t believe my eyes, watching my 10-year-old son standing for the first time in three years. My miracle boy looked so tall in his brace with his hand placed proudly on his wheelchair handle, beaming as he saw the world just like other children of his age,” says Shelly Wall, thinking back to that day

in July this year. “I’ve never had a doubt that Noah can achieve anything he wants – despite the dire warnings he’s received all his life.”

Standing is a skill most parents celebrate with their children. But Noah’s achievement is remarkable because, before he was born, doctors told Shelly and Rob that their son would never walk, talk, or even eat unaided.

It was discovered that Noah’s brain was being destroyed by a porencephalic cyst – a cavity filled with cerebrospinal fluid – while he was still in the womb.

On five occasions Shelly was urged to terminate her pregnancy and plan her unborn child’s funeral – “we even bought a tiny coffin” – yet she refused to give up hope.

Noah was born in March 2012 with just 2% of his brain, spina bifida and a rare condition, hydrocephalus – water on the brain, which causes dangerous pressure. He wasn’t expected to be born alive – but by the age of three, he had regained 80% of his brain. Doctors were speechless.

“My little boy was unable to walk like other toddlers. For years he had a mattress monitor that set off an alarm every time he stopped breathing at night. I barely slept,” Shelly recalls. “It was terrifying. But somehow he remained happy.”

Because of his condition Noah requires round-the-clock care. He needs daily physio from his mum and dad to stretch his muscles and can wake up multiple times in the night, needing them to turn him.

“Caring for Noah is a daily challenge, as I’m disabled, too,” says Shelly. “I have a rare form of arthritis called Still’s disease, which limits movement and causes pain. But it doesn’t stop me, and that’s what I teach Noah. He never asks why am I different or gets upset about the things he can’t do.”

While many marriages crumble under the pressure of caring for a disabled child, Shelly and Rob’s remains unbreakable.

“Rob and I have laughed and cried floods of tears together on this journey. I was lonely when I found out about Noah’s condition. People crossed the street to avoid me. One relative even said, ‘I can’t understand anyone having a disabled baby when you have a choice.’

“I can’t believe someone in my own family would turn their back on me for loving my baby. I cried myself to sleep many times, but it’s their loss. They’ve missed out on Noah’s amazing life. Now I focus on the achievements he makes every single day.”

Noah spends hours in hospital for investigations and surgery to keep him well and pain-free, but takes it in his stride.

“He’s obsessed with cars, Minecraft and singing along to musicals,” Shelly says.

“He enjoys making up terrible jokes and laughs harder if they don’t make sense. Every day he surprises us with a new skill. ‘I can pull my socks up,’ or ‘I’ll put on my own T-shirt myself,’ he’ll beam. It took two years to help him eat a sandwich on his own, but he got there.”

Noah doesn’t learn like other children of his age, but he has recently learnt to read a whole sentence – despite doctors predicting he’d be “a vegetable”.

In March, the family dressed in Star Wars costumes and enjoyed space-themed food for Noah’s birthday. His 108-year-old auntie sent her love – and so did a very special Jedi.

“Luke Skywalker [actor Mark Hamill] contacted Noah and said, ‘May the force be with you.’ It made his year,” smiles Shelly.

Noah is really quite the celebrity. In 2013, Nick Knowles and the DIY SOS team transformed the family home, Noah has been snapped with Sophie, Countess of Wessex, he knows Dragons’ Den ’s Duncan Bannatyne and chats to reality TV star Vicky Pattison.

He even bagged a starring role in the Sainsbury’s Christmas advert in 2015. “He put the star on top of the tree and my heart burst with pride,” says Shelly. “We have no idea how much time we’ll have left with our boy, so we make every day amazing.”

When Noah shared his dream of getting married and becoming a father, Shelly took him wedding-cake tasting and shopping.

“In just a few more years Noah will be a teenager. I can’t imagine life without him, so my motto is, ‘Why wait?’ We know there’s
a chance he might not reach adulthood,” she adds.

“Noah brought his doll to the shops, planned his baby’s nursery and practised being a daddy. It’s hard to accept his dreams may
never become reality, but I never show my fears to Noah.”

During 2020’s lockdowns they came up with homespun fun. “Our favourite time was celebrating the Day of the Dead festival with colourful banners, and we made burritos. Every day is a fun day when Noah is here.”

Noah can quickly become ill. Just weeks after his birthday, his health suffered.

Shelly reveals, “He was sick, confused and had an awful headache – all signs that his shunt [tube draining fluid from the brain] was blocked.

‘We waited 10 hours for a hospital bed and found he had a water infection – still life-threatening for Noah. It’s exhausting being on alert, but it’s second nature now.”

Each year hundreds of people write to Noah, thanking him for the hope he’s given them. “Their pleas for advice are constant and it’s upsetting
for me to relive our story. But it’s important to show how far he has come,” says Shelly.

“My biggest dream for Noah is happiness. He wants to own a home and drive a car and visit Hawaii. Noah is proof anything is possible with hope – and that’s a good lesson for all of us.”