Our son grew to death
Liam in Australia
Saturday 27th October 2007
Kneeling in front of my 5-year-old son, Liam, I straightened his new navy jumper.
'Now don't be nervous,' I told him. 'Mummy will see you later.'
It's a nerve-wracking moment, waving your child off to school for the first time. But part of being a parent is learning to let go.
Anyway, as Liam walked through the gates of Seaburn Dene Primary School, Sunderland you'd never have guessed it was his first day. At 4ft 5ins, he was head and shoulders above his classmates. He'd always been big.
'Look at his huge hands!' my husband Alan, 27, had gasped when Liam was born. 'Our lad's going to be like Pat Jennings!'
The legendary goalkeeper was known for his big hands.
Every time we stood him against the height chart we'd drawn on the kitchen wall, he seemed to have notched up another inch. Liam's chest worried me, though. It was narrow and concave. So when he was 3, I took him to the doctor about it.
'I can't see anything to worry about.' the GP had said, examining him.
By 8, Liam was already 5ft tall. And by the time he was 21, Liam was 6ft10in and literally had to stoop to walk through most doorways. He looked just like the footballer Peter Crouch - all long gangly limbs.
'Are you ever going to stop growing?' I'd joke spotting his size 12 feet hanging out the end of his bed.
By now, Liam had a good job with the civil service. But in November 2005, just before he turned 22, he jacked it in to travel round Australia with his mate Chris 'Dozzie' Dolan.
'Be careful,' I pleaded as we said our goodbyes.
'I'll be fine Mum,' he promised.
Of course, I missed him terribly. But Liam rang every Sunday to let me know how he was doing. He'd been gone nine months when I got a call one Wednesday morning.
'It's Liam's friend, Chris, here,' said a voice.
Dread swept over me. I knew something must be wrong.
'It's Liam isn't it?' I panicked. 'What's happened to him?'
I was so shocked, I passed the phone to Alan. When he hung up, he explained what had happened.
'Liam's at Royal Perth Hospital after he had severe chest pains,' he said.
Chris had put the doctor on the phone who'd explained that Liam had something called Marfan Syndrome and had to have open heart surgery. Heart surgery? I couldn't take it in. And what was this Marfan syndome?
By the time the doctor called back, we were booked to fly out the following day.
'The surgery went as planned,' he told us. 'Liam had a tear in his aorta, the biggest artery in his body. So we've replaced part of that and a valve in his heart.'
'We'll be there the day after tomorrow,' I said. 'Please tell him we're coming.'
It was 12.30am, on the 11th August, when we finally walked onto the ward at the Royal Perth Hospital. Liam was asleep. Apart from the machines surrounding him, he looked totally normal.
'We're here love,' I whispered.
Apparently Liam's height was the biggest giveaway for doctors. His long fingers, clawed toes and pigeon chest were all signs too. Signs that had been missed by the doctors back home when he was growing up.
'It's called Marfan Syndrome,' Liam's surgeon explained. 'It's a genetic condition that can cause problems with the heart. People with the condition are warned against contact sports, or strenuous lifting. Your son has actually ripped his aorta.'
Liam was out of it that night but he woke up the following morning.
'Look at this,' he said, showing us the bright red scar running round down his chest.
I kissed him, overjoyed he'd pulled through.
We left at 8.30 that night. We didn't want to tire Liam out. But at 4am, there was urgent knocking at our door. It was the hostel owner.
'The hospital called,' he told us. 'You have to go, now.'
Liam had a seizure,' we were told in a side room. 'He's not good.'
Alan and I paced endless corridors, as surgeons battled to save our son. It was nine whole hours before the surgeon appeared.
'I'm sorry, we did everything we could.'
I froze with shock. Nine months earlier, I'd waved a healthy son off on a long adventure. Now, at just 22, he was gone.
Four days later, we flew back to England feeling empty and lost. Liam's body followed shortly afterwards. After the funeral, the whole family was tested for Marfan. We were all cleared, so why Liam got it, we don't know.
I just wish someone had spotted the signs when he was a boy. That's why we want people to know about Marfan's, to know what to look for. There's no cure for it, but Liam could have altered his lifestyle.
Now, 15 months on, I miss him more than I can say. I'd give anything to hold him again. But like that first day at school, I know it's time to let my little boy go.
For more stories about people of unusual size, check out:
The world's smallest mum
My daughter weighed nine stone at the age of 3