For my Nana’s 100th birthday, my whole family gathered at her nursing home. My youngest son, Ollie, 16 months, was playing on the floor, shuffling on his bottom between all the older ladies.
‘Oh he’s so cute,’ one gushed. ‘He’s hopping around like a little bunny!’
My heart sank. That’s a bad sign, I thought. Ollie should be walking by now.
He’d wake in the night in pain too. My husband Mark, 45, and I were so worried, we’d taken him to different doctors. A physio told us his muscles were tight. We were sure there was more to it though, so when Ollie was two, he had an MRI scan.
‘I’m afraid it’s a lot worse than we thought,’ a specialist said. ‘Ollie has cerebral palsy due to cytomegalovirus.’
CMV is a common virus. Devastatingly, tests showed I’d passed it on to Ollie while I’d been pregnant with him. Given a walker with wheels, he soon learnt to zoom about after his older brother Elliott, then five, and sister, Millie, three.
Every day, we did exercises with him. He also had hydrotherapy to improve his strength and Botox injections to reduce muscle tightness. Throughout it all, Ollie was a real battler. He loved making people laugh and was obsessed with Katy Perry!
Six months on, I took him for a check up.
‘Do you think Ollie will ever walk?’ I asked.
‘He is walking,’ the specialist said.
‘No, without his walker?’ I pressed.
‘The best you can hope for is two walking sticks,’ he said.
Outside, I broke down. What kind of life will my boy have? I fretted. He’d never kick a ball or climb trees.
I couldn’t accept it. That night, I sat at the computer.
Doing some research, I came across a surgeon in America called Dr Park. He treats children with cerebral palsy using selective dorsal rhizotomy (SDR). It involves selectively cutting the nerves causing tightness.
The website had pictures of children previously in wheelchairs who were now running.
This can’t be real, I thought. Immediately, I fired off a message.
I was asked to send copies of Ollie’s MRI, X-rays and videos of his movements so they could assess whether he was a suitable candidate. Just two weeks later, I was checking my emails and saw a reply.
‘We’re going to America!’ I gasped.
‘Katy Perry!’ Ollie cheered.
‘No love,’ I laughed.
From all the notes, Dr Park said Ollie had spastic diplegia. With surgery, he predicted our boy would be able to walk unaided after a year. We’d need to pay for flights, two sets of splints and walking sticks, as well as accommodation for a month, so Ollie could have physio after surgery.
‘It’s going to cost $70,000,’ I told Mark.
So we set up a GoFundMe page, held fundraisers and shared Ollie’s story on Facebook. The local newspaper even ran an article.
‘It’s me!’ Ollie said, pointing at himself in print.
‘Yes, you’re a superstar!’ I told him.
Mark and I were so overwhelmed when total strangers sent us donations. Four months later, when Ollie was three, we had the funds. And in December 2014, the five of us flew 14,500 kilometres to St Louis Children’s Hospital in Missouri.
The surgery took just three hours but changed Ollie’s life forever. Back home, we all cheered him on as he pulled himself up on the furniture. Amazingly, six weeks after the operation, Ollie took eight wobbly steps.
‘I did it!’ he beamed.
Next I set up chairs with chocolates on them.
‘If you can walk between them, you can have the treat,’ I told him.
We couldn’t believe it when he did it. He loved Frozen, so I said, ‘If you can do 20 steps, I’ll make you an Olaf cake.’
For 40 steps, I made him a Mickey Mouse sponge. And we were all there to shower him in kisses when he took 100 tiny steps! One day, Elliott and Millie ran into the kitchen.
‘Ollie just jumped off the step in the garden!’ they cried proudly.
Six months after the op, I was getting ready to take Ollie to childcare.
‘Do you want to take your walker?’ I asked him.
‘No, I don’t need that anymore,’ he said confidently.
Now he’s showing no signs of spasticity. He can ride a bike and do somersaults. It’s unbelievable to think we were told he’d never walk and now he can run!
Before, I imagined a life full of hospital appointments and uncertainty. Now he’s preparing to start mainstream school and we’re hoping to take the kids skiing!
Best of all, Dr Park thinks Ollie will only need three more years of physio before he’s discharged completely. It feels like a miracle and I want other families to know SDR could be an option. When Ollie is strong enough to walk around Disneyland, we’ll return to the US and visit Dr Park. We want to thank him from the bottom of our hearts.
One night when I put Ollie to bed he grinned.
‘I don’t want to be a teenager,’ he said. ‘I want to be a superhero.’
‘Oh Ollie, you already are,’ I told him. He’s my hero.
This story was originally published in that's life! Issue 5, 2 February 2017.