Our boy was even more spe­cial than we’d guessed

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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!

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