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…
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
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