$100,000 to walk down the aisle
‘It’s just colic,’ doctors said, though I wasn’t convinced.
As she grew, she missed her milestones. Doctors insisted it was because she was premmie and said she’d catch up.
But when she still couldn’t sit up aged one, I pushed for answers.
Finally, at 17 months, an MRI scan revealed the truth.
My precious girl had cerebral palsy, caused by brain damage.
‘It’s likely she’ll never talk, stand or walk,’ the specialist told me.
Her condition meant her muscles were too tight and stiff and could spasm.
How has this happened?
I thought, my mind racing.
Scouring my medical notes, I spotted something I hadn’t been told.
Harlie had contracted an infection at birth – and one of the possible side effects was cerebral palsy.
I just have to focus on helping her now, I thought.
Starting speech, physio and occupational therapy, I watched my determined bub make tiny improvements.
At two and a half, she sat up unaided and was talking!
‘Oh my gosh Harlie!’ I beamed proudly.
She just couldn’t straighten her legs, so walking was impossible.
By the time she was five, she was waking in the night with painful spasms.
If she managed to stand, it
had to be on her tiptoes or she’d shriek in pain.
It was heartbreaking.
But Harlie always had a smile and loved princess costumes. For Book Week, we’d turn her into Cinderella or Rapunzel.
Researching treatment options, I’d come across a surgeon in the US, Dr Park.
By cutting the nerves in the spine that caused tight muscles, he’d helped kids like Harlie to walk.
It gave us hope, but it cost $80,000, plus $20,000 for flights and accommodation.
Maybe one day, I sighed, vowing to save.
Then I told my friend, Ali, 30, about my dream.
‘Let’s raise funds!’ she said. So we set up a charity, the Harlie Russell Foundation.
Meanwhile, I sent off my girl’s medical notes, X-rays and videos of her movements to Dr Park’s team.
When I received a reply, I scanned it frantically and three words jumped out.
Congratulations... will walk... I read.
Grabbing my phone, I called my mum, Judy,
61, and dad, Rob, 62.
‘They can fix her legs!’ I sobbed.
The surgery would help Harlie use her arms better too and she might even write.
When we raised $100,000 in less than a year, I was so grateful.
‘We’re going to America,’ I told Harlie.
We also had a special goal in mind. Krysta had booked her wedding!
‘Maybe she’ll be able to walk down the aisle!’ I said.
The night before our trip in August 2017, I didn’t sleep a wink. Until Dr Park assessed Harlie, there was a chance the op might not go ahead.
Thankfully, I needn’t have worried. Meeting Dr Park in his office, he smiled.
‘This is going to be so good!’ he said.
Harlie was prepped for surgery the very next day.
After three long hours, I was so relieved when they told me it had all gone well.
Amazingly, the pain and spasms stopped immediately.
Two weeks later, Harlie had an op to release the tendons in her legs, then she recuperated at our hotel.
One night, she stretched her legs straight out in front of her – for the first time ever.
‘Look what I’m doing Mum,’ she said, casually.
It was a magical moment. Back home, we joined a gym and used the equipment to strengthen her muscles.
And Harlie got to grips with her new walking frame.
‘I’m going to walk for Krysta’s wedding,’ she said.
Working hard, she got more confident with her frame.
Then, two weeks before the wedding, Harlie managed to walk just holding my hands. ‘You did it!’ I cheered. On the big day, Harlie held my hand and another bridesmaid, Melissa’s, and we walked down the aisle. That’s my girl! I beamed. The surgery had been worth every cent.
Now eight, Harlie is a chatterbox who loves to tell stories and make up songs.
We’re so grateful to all our supporters.
Their generosity has meant the world.