REAL LIFE

Did a tantrum paralyse my boy?

Coralie tucked her little boy in as usual. The next morning her family's life was turned upside down.

Coralie Mitchell. 34, Wellard, WA

My eyes jolted open. In another room, I could hear the sound of an anguished cry. One of the twins, I thought. My partner Damian was already up tending to our boys, Andrew and Michael, then 17 months, and their brother Charlie, then five.

Still, by the sound of it, someone wasn’t happy. So I got up and wandered into the living room to see what was wrong. Little Michael was sitting on the floor, slumped against the couch. He was usually such a smiley boy but his face was covered in tears.

Instinctively, I swept him up for a comforting cuddle. Straight away I noticed something odd. Michael wasn’t clinging to me the way he normally would. In fact, his whole body was limp. What was wrong?

Twins Andrew and Michael

Quickly, I went back to the bedroom to get dressed, placing my boy carefully on the bed. He didn’t wriggle. Instead, he was strangely still. Panic bubbled up inside. ‘We need to go to hospital,’ I shouted to Damian, and minutes later we were racing to the nearest one in Fremantle. On the way, Damian explained he had noticed Michael wasn’t moving like he usually did when he’d lifted him out of bed that morning. ‘I assumed he just needed to wake up a bit,’ he said.

My mind whirred with possible reasons for why our son had woken up paralysed. Was it something to do with the tantrum he’d had the previous evening? He’d thrown his head back, hitting it on the floor. When I’d tucked him into bed that night he’d seemed fine. But now I was filled with dread.

My boys’ future had changed forever.

Something else was troubling me too. Although the twins were always happy and energetic, deep down, I’d been wondering why they were both still a tiny size 00. They weren’t developing like Charlie had. Andrew could barely talk and Michael still hadn’t managed to walk. ‘Be patient,’ doctors had assured me. ‘They’ll get there.’

I’d spent the past few weeks holding Michael’s hand, encouraging him to take steps. Had I pushed him too far? At hospital, our boy was taken for a CT scan, which revealed he was suffering from quadriparesis, a weakness of the limbs.

Further investigation showed the bones around Michael’s spinal cord were far too small, stopping it from developing. Horrifically, the doctor explained that our boy bumping his head could have snapped it – meaning he could have been killed. ‘Please fix him,’ I begged.

Desperate to protect Michael from the fear I felt, I cuddled him tightly and sang him his favourite Wiggles’ songs. Days later, after further tests, he had surgery to decompress his spine and get him moving again. While he was there, a doctor approached me with some more test results. They showed something shocking.

‘Your son has Morquio syndrome,’ the doctor said. He explained it’s a rare genetic condition that means my boy’s body lacks a special enzyme that enables him to grow. Michael’s bones are misshapen and stunted, meaning he’ll be short-statured for life.

That night, I cried myself to sleep, mourning the loss of the person I’d pictured Michael becoming. Gone were my visions of him playing rough and tumble with his brothers in the backyard. The slightest knock or fall could prove debilitating.

A full torso cast – called a Minerva brace – supports the spine.

And just as we were coming to terms with it, we were dealt another shattering blow. ‘We should test Andrew for the condition,’ the doctors said. Please no. Sure enough, my heart was crushed again when it was confirmed that Michael’s twin suffers from the syndrome too. Could this really be happening? My boys’ future had changed forever.

In October 2011, we travelled to NSW as a family so Michael and Andrew could undergo delicate surgery that would open up space for their spinal cords to grow. Specialists inserted metal plates and bars into their spines, hoping new bone would form in between. I prayed it would work, desperate for the twins to have the best life possible.

Fortunately, the procedure was a success and afterwards both wore special full-torso casts called Minerva braces to support their spines. ‘They’ll need to stay in them for at least seven months,’ the doctor warned.

Undeterred, my beautiful boys looked on the bright side. Their casts were decorated, making them feel like superheroes in their protective armour! My eyes watered watching them giggling away and cuddling each other in spite of the pain they were in. Was there anything that didn’t make them smile?

After a month in hospital, we returned home to get back to life with their new special suits. Andrew grew particularly attached to his Spider-Man brace. He’d dress it up by wearing goggles and spin around on the floor as though he was breakdancing.

The boys in their ‘armour’

When I took the brace off to wash him, he’d demand I put it back on. Eventually, the suits seemed to have super powers too. At three, Michael finally took his first steps. ‘Good boy,’ I beamed, throwing my arms around his tiny frame.

In May 2012, it was time for Michael and Andrew to take off their armour and stand on their own. And they proudly did. ‘You’re finally free,’ I told them. After that, we went to hospital nearly four times each week for check-ups, and in June last year I signed them up for a drug trial aimed at giving the boys vital enzymes they’re both lacking.

It meant sitting in hospital for six hours each week while they received a transfusion, but it was worth it. A year later, it’s performed miracles! When Michael, who could have been confined to a wheelchair, jumped for the first time, I burst into tears.

But that was nothing compared to the pride I felt watching them run at their school carnival. It was a moment I thought they would never have. ‘You did it!’ I beamed.

Today, Damian and I are no longer together, but I’m continuing to lobby the government to make the drug widely available. The twins are now five and while they’re still a tiny 95cm tall, they’ll always be superheroes to me.

Published in issue 44 2014

Morquio syndrome

– Morquio syndrome is a rare condition affecting around one in 700,000 babies.
– It is one of a group of disorders in which sufferers lack an enzyme required to break down sugar molecules which help cells build bone, cartilage, tendons, corneas, skin and connective tissue.
– Those with Morquio syndrome usually have normal intelligence but their physical development is affected, meaning they often reach a height of just 100cm as adults. Their eyes, airways and heart can also be affected.
– For more information, visit www.mpssociety.org.au

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