Our boy was even more special than we’d guessed
Wendy Watkins, 37, Hull
As a doctor scanned my little boy, my mind raced. Riley was just 5 years old but, recently, he’d given us cause for concern. It all began in April 2017. ‘Quick! Something’s wrong with Riley!’ my husband Chris had shouted from upstairs. Riley’s little body had gone limp at bath time.
As I held him, I noticed the left side of his face drooping. He couldn’t lift his arms, and slurred if he tried to speak.
But, by the time the paramedics arrived, Riley was back to his normal self.
We hoped it’d be a one-off. But the terrifying episode repeated itself every few weeks. Nights in hospital, visits to neurologists, scans – we searched for answers.
Riley was, by every medical definition, a perfectly healthy boy. But we just knew that something wasn’t quite right.
And here we were again, being told he was fine after yet another scan.
In July 2017, after an episode, we pushed for another diagnosis. Finally, we were offered an MRI.
‘Riley has a mass on his brain,’ the consultant said after.
I tried to stay positive, told myself not to think the worst.
But, in September, after more tests, we got bad news – though Riley’s tumour wasn’t cancerous, it was a serious condition called moyamoya.
A specialist explained the symptoms of this rare disease are narrowing or blockage of the four main blood vessels in the brain. The cause is unknown.
However, without surgery, it’s life-threatening. ‘It affects about one in every million people in the UK,’ he added.
Treatment was available – but only at Leeds Hospital, 60 miles away.
The news hit our family hard.
Chris and I were terrified for Riley, but we had our other children to think of, too. Riley had a twin brother Noah, who felt lost without his partner in crime. And then there was Jessica, 2, who didn’t understand why Mummy and Daddy were spending so much time at the hospital.
Riley would need two major surgeries to re-route the blood supply on both sides of his brain.
So we were grateful when The Sick Children’s Trust offered us a flat in Eckersley House – a home for families with children in hospital – three minutes from his bedside. It meant we could focus on Riley.
In January 2018, he had the op on the right side of his brain.
Hating seeing him in pain afterwards, I had an idea to help his recovery…his twin brother.
‘I can’t wait to play in the hospital playroom,’ Noah said.
Riley, who hadn’t left his bed and had barely eaten or spoken in days, suddenly sat up. ‘I think I’ll go play with Noah,’ he smiled. I let out a sigh of relief, so happy to see that smile again. Riley was far from recovered. There was a long road ahead, but my boy was still in there somewhere. His second surgery in March 2018 was a lot more risky. They’d unblock the arteries, before trying to create new ones with veins.
For nine hours, I paced the corridors. It was terrifying not knowing what was happening.
‘He’s in recovery,’ a nurse told us soon after. I wanted to hug her! We were so overjoyed.
After three weeks, Riley was finally allowed home.
He’ll always suffer with episodes, caused by the moyamoya, but the surgery has certainly helped him.
But, for now, he’s running around with Noah and thriving at school. You’d never know anything was wrong with him.
We’ve started fundraising for The Sick Children’s Trust, Ward 52, at Leeds Hospital, and for any surgeries that Riley may need in the future.
Without its help, I don’t know what we would’ve done.
We still have a long way to go but, for now, we’re relishing every moment with Riley while he’s healthy and happy.
We hoped that the episode would be a one-off…
My boys – both superheroes!