Our son can’t grow up so we’ll make his life mag­i­cal

Some­times Jo Par­rott, 34, from Scar­bor­ough, can’t be­lieve that her lit­tle boy will never grow up…

Pick Me Up! Special - - Contents -

It only seems like yes­ter­day that I had my hus­band Chris up in the loft, get­ting the bags of baby clothes down. I’d found a lit­tle suit with Tig­ger on it and smiled.

It was the first out­fit my son Tyler, then two, had worn when he was born.

‘Now his lit­tle brother gets to wear it,’ I smiled, stroking my bump.

‘He’s go­ing to be trou­ble like his brother,’ Chris laughed.

I could al­ready pic­ture the two of them run­ning around to­gether, kick­ing a foot­ball and rid­ing their bikes.

In Fe­bru­ary 2007, at 10 days over­due, Rhys came into the world.

At 7lb 13oz, he was an adorable bun­dle with dark hair. ‘Hello gor­geous,’ I whis­pered. We brought Rhys home in the Tig­ger sleep­suit, and for the next two weeks, ev­ery­thing was per­fect. But then dark­ness crept in… When Tyler was a baby, he’d have those cute lit­tle baby star­tles, where he’d jolt awake sud­denly.

Rhys had the same star­tles, but his came in clus­ters, with noth­ing even star­tling him.

One day when Rhys was six weeks old, I was rock­ing him gen­tly on my knee.

All of a sud­den, his eyes rolled back, as if he was try­ing to fol­low a spi­der on the ceil­ing.

‘Some­thing isn’t right,’ I said to

Chris, wor­ried.

Tak­ing him to the GP, I was told that this was nor­mal for a baby.

But I knew my son, and I knew some­thing wasn’t right.

Then, when Rhys was 11 weeks old, we had an­other scare. That morn­ing, Tyler woke me up at 2am need­ing a wee.

But just then, I looked over at Rhys’ cot… Why hadn’t he wo­ken up for his feed?

Rush­ing over to his cot, I froze.

He was awake, but silent, and his lips were tinged blue. ‘Chris!’ I yelled, ter­ri­fied. I quickly threw on a pair of jeans and rushed Rhys out to the car, rac­ing to the hospi­tal.

‘Please help my baby!’ I screamed, as I ran into A&E.

As a group of nurses whisked Rhys away to be re­sus­ci­tated, an­other nurse led me to the fam­ily room. I called my mum, Deb­bie, and when she ar­rived, I broke down. ‘I’m so fright­ened,’ I sobbed. Just then, a doc­tor came in. ‘We think Rhys has been hav­ing seizures,’ he told me. ‘He’ll need a CT scan.’ Those star­tles he’d been hav­ing were seizures… Rush­ing to his bed­side, Rhys looked so small and vul­ner­a­ble. ‘Mummy’s here,’ I whis­pered. Af­ter his scan, Chris and I were called back for the re­sults. ‘I’m afraid Rhys has tuber­ous scle­ro­sis,’ the doc­tor said. ‘It means he has be­nign tumours grow­ing in dif­fer­ent parts of his body, like the brain, heart, kid­neys and lungs.’ I just wanted the doc­tor to stop talk­ing… I couldn’t face hear­ing what this all meant for lit­tle Rhys. He could have learn­ing dis­abil­i­ties, breath­ing dif­fi­cul­ties… ‘We won’t know un­til Rhys is older how much he’ll be af­fected,’ the doc­tor ex­plained. ‘But the fact that Rhys has de­vel­oped symp­toms so young, doesn’t look good.’

When the doc­tor ex­plained that this con­di­tion is ge­netic, guilt swept over me.

It meant that Chris or I had passed it onto him… ‘Could Tyler have it?’ I asked. The doc­tor nod­ded. But I knew in my heart that he was OK.

It was just Rhys that this mon­ster had dug its claws into.

Rush­ing to his side, Rhys looked up at me and smiled.

‘We’ll do this to­gether,’ I whis­pered. ‘Don’t be fright­ened.’

A week later, we were al­lowed to take him home, but this new fu­ture looked so un­cer­tain.

Apart from his seizures, Rhys was a happy lit­tle baby, gig­gling when I tick­led his feet, and his big brown eyes light­ing up when he tried his

first piece of choco­late.

Soon enough he was crawl­ing and pulling him­self up on the sofa.

And at 11 months, he took his first steps.

‘Come to Mummy,’ I smiled, as he tod­dled into my arms.

Soon, Rhys was climb­ing the sofa with Tyler, chas­ing him around the gar­den, and I was con­vinced the doc­tors had got this wrong.

But Rhys couldn’t speak and strug­gled to use a fork.

And it was some­where between 12 and 18 months that his de­vel­op­ment grinded to a halt.

Around that time, I found out I was preg­nant again. This baby could have it, too, I wor­ried. There were no scans that could tell us, but ter­mi­na­tion wasn’t an op­tion – that would be like say­ing we re­gret­ted hav­ing Rhys, which of course we didn’t.

As Rhys grew, his seizures be­came worse and worse.

It ter­ri­fied me, watch­ing his eyes roll back and his body shak­ing.

Most days I’d have to rush him to the hospi­tal as the seizures would go on for so long.

But the smile was never off his face for long.

Back home, he’d get on with his an­i­mal puz­zles and watch his favourite pro­gramme, Tele­tub­bies.

Fin­ley was born just af­ter Rhys’ se­cond birth­day.

As I dressed him in the same Tig­ger out­fit, I scoured his face for any clue…

We still hadn’t had the ge­netic test­ing done, but be­fore long, Fin­ley was over­tak­ing Rhys…

When Fin­ley started pre-school, he could draw and paint, and used a fork with no trou­ble.

But Rhys, my lit­tle Peter Pan boy, was trapped in his own Nev­er­land, months be­hind his younger brother.

And the longer there was no change, the more I be­gan to ac­cept that it was go­ing to be this way for­ever.

Rhys would never get mar­ried or have chil­dren of his own.

He’d never work or get told off for sneak­ing away to the park to drink cider when he was 15. And when his broth­ers ar­gued about who was bet­ter, Spurs or Man­ches­ter United, it made me so sad that I would never wave Rhys off to foot­ball. Yet he looked so nor­mal… There was no out­ward clue as to what was go­ing on in­side.

Now 11, he’s re­cently mas­tered us­ing a spoon.

Watch­ing his face light up as he scooped up his beans was amaz­ing.

All mums say their chil­dren are their ba­bies for­ever, but Rhys re­ally will be.

He has a lit­tle sis­ter now, Mol­lierose, two, and she’s al­ready way ahead of him.

But he’s got her wrapped around his lit­tle fin­ger.

When he doesn’t feel like lift­ing his spoon, she’ll feed him!

For the last four years, Rhys has been on a new drug for his seizures, which helps.

They cut trips to the hospi­tal down to every cou­ple of months.

The NHS said they can’t keep fund­ing it, but I’m fight­ing hard.

Last year, we went on hol­i­day to Dis­ney­land Paris, and Rhys squealed with de­light on Aladdin’s Fly­ing Car­pet ride.

He also had a soft spot for Snow White.

‘He’s a ladies’ man,’ Chris laughed.

And that’s what we hold on to – the fun and the laugh­ter.

Rhys loves cud­dles and en­joys leap­ing on me while I’m sat on the sofa.

His broth­ers and sis­ter can have blood tests when they’re older, to see if they have the same con­di­tion.

Although we take him out in a wheel­chair be­cause he gets tired, at home he pot­ters about and loves play­ing his gi­ant Con­nect Four in the gar­den.

Re­cently, we were told he’d de­vel­oped an­other tu­mour on his kid­ney.

He had a seizure in the bath, and, too heavy for me to lift, I had to call Chris to get him out.

It gave us all such a fright, so bath times are banned now!

In­stead, we’re hav­ing a wet room in­stalled in our house.

At night, Rhys sleeps next to me – Chris has been re­lo­cated to an­other bed next to us.

And every morn­ing, he snug­gles into me and we watch Tele­tub­bies, still his favourite show. Rhys is my lit­tle Peter Pan boy. He may not have the fu­ture he de­serves, but I will al­ways be in his shadow, help­ing him to fly as high as he pos­si­bly can.

His gor­geous smile never fades

The con­di­tion is ge­netic

He was in and out of hospi­tal

Rhys brings me joy every day

He adores his lit­tle sis­ter

We hold on to the fun and laugh­ter

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