The little boy who’ll never grow up
There’s no one in the world like our son Dylan Danielle Myers, 41, Ongar, Essex
‘Your baby’s so sweet!’ people say, peering into his buggy
Pulling funny faces at my little boy, I also tried singing silly songs.
‘Come on, Dylan,’ I cooed, grinning as wide as I could in the hope he’d mirror it.
But that baby did not want to smile.
It was October 2010 and, with my baby 6 weeks old, I’d been looking forward to those cute gummy grins.
His sister Scarlett, then 4, had been such a little smiler, hit all her milestones at the times dictated by baby books.
But then, we’d always known that Dylan was going to be different.
At my 20-week scan, we’d been told he had a condition called situs invertus.
It meant all his organs were reversed.
Soon after that, we found out he had an unrelated growth disorder, too.
Doctors couldn’t confirm what effect this would have on his life.
Surprisingly, he’d been the picture of perfection at birth, weighing 5lb 5oz.
‘You’d never know anything was wrong,’ his daddy, my husband Richard, then 35, had said.
But now, we were worried. And it wasn’t just about the lack of him smiling.
He barely slept, crying all day and night.
‘It’s colic,’ the GP told me. But I suspected something more.
Then, two weeks later, as Dylan lay on the sofa, his eyes rolled into the back of his head.
His tiny body went stiff and started shaking.
It only lasted a few seconds and, in a haze of exhaustion, I wondered whether I’d imagined it.
But then it happened again.
At Princess Alexandra Hospital, Harlow, scans couldn’t find anything wrong.
Transferred to Addenbrooke’s Hospital, in Cambridge, he was prodded, poked and observed.
Yet even the experts couldn’t decipher it.
‘You’re a little mystery,’ I told Dylan, kissing his forehead.
In January 2011, we visited my dad Barry, then 61, at work one afternoon.
Proudly holding my baby boy in the air as we left, I wiggled his little hand in a wave.
‘Bye, Grandad,’ I said for him.
But, as I did, I felt Dylan’s little body
go stiff once again. In seconds, he turned blue. Dad stepped in, grabbing him from me as I screamed.
At hospital, Dylan was diagnosed with apnoea, too. It meant he’d randomly stop breathing.
It could happen any time. We were coping with one frightening diagnosis after the other.
By the time he was 4 months old, Dylan had barely grown.
Even medics at Great Ormond Street Hospital were baffled.
Nobody in the world had what Dylan had.
He was diagnosed with SWAN – syndrome without a name.
And soon, we realised how unwell he was...
‘We don’t think he’ll survive past 6 months,’ doctors warned.
Crumbling into each other’s arms, Richard and I were shell-shocked.
‘What’s happening?’ Scarlett asked when she saw our bloodshot eyes.
‘Your brother is very poorly,’ I choked.
Over time, Dylan’s undiagnosed condition gave him arthritis, inflammatory bowel disease and a suppressed immune system.
He had many more apnoea attacks, sometimes, more than nine a day.
Richard and I, even Scarlett, then 10, had to be trained in how to administer oxygen.
On steroids, pain relief and small doses of chemotherapy for the inflammation in his body, including the arthritis and inflammation of his organs, it took so much to keep our boy alive and pain-free.
His tiny body grew just a few millimetres every year.
We learnt to accept Dylan had a mystery condition that meant he had the body and mind of a baby.
He would simply never grow up.
As he reached his third, fourth, fifth birthdays, he was still so small.
‘Your baby’s so sweet,’ strangers would say, peering into the buggy.
I’d nod and smile, not knowing how to explain that he wasn’t a baby at all. Dylan is now 9.
But, despite the prognosis, he’s our little miracle.
He’s so tiny, he sits in a high chair, sleeps in a cot.
He’s so poorly, but now he can finally show us his smile. He laughs his head off
watching Peppa Pig or when Scarlett, now 13, pulls a face. He charms us all. Though he can’t talk, Dylan’s created his own sign language. He calls
Scarlett ‘Ga-ga’, and hilariously calls my motherin-law ‘Bum-bum’!
But it’s not all giggles. Dylan’s spent so much time on hospital wards.
He’s under 17 different specialists at Great Ormond Street Hospital, each one battling to find a diagnosis.
As we wonder if that day will ever come, we grieve the life he could have lived.
Dylan will never go to university, get married, carry on the family name. Heartbreaking.
In nine years, Dylan has grown the amount a baby usually does in a single year.
The 9/12-month clothes he wore back then still fit now. It’s like time has stopped. He’s our own Peter Pan. But we don’t know how long we have with our boy.
We’ve been told to say goodbye so many times. One day it will be for real. Until that terrible time comes, we’ll make the most of every moment.
My little boy with the big smile
So much time in hospital
Dylan brings us all so much joy