The lit­tle boy who’ll never grow up

There’s no one in the world like our son Dy­lan Danielle My­ers, 41, On­gar, Es­sex

Chat - - CONTENTS -

‘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

Mummy’s miracle

Dy­lan brings us all so much joy

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