- Born with lobster claw syndrome, Hülya’s legs were under-developed, and hands were small with missing and fused fingers
- Navigating life without limbs, Hülya moves around on a small rolling board with wheels
- A mother, wife, business owner and advocate for people with disabilities, Hülya lives her life without limits
Here Hülya Marquardt, 42, tells her story in her own words.
Blinking my eyes open, beeping machines and hospital curtains blurred into focus. Catching a glimpse of my shoes in the corner of the room, I shuddered.
Looking down to where my legs should have been… there was nothing.
‘Hülya, you may never walk again… but this isn’t the end,’ I told myself.
It was 2002 and, aged 18, both my legs had been amputated above the knees.
Born with a rare genetic condition called lobster claw syndrome, my legs were under-developed, and my hands were small with missing and fused fingers which were basically claws.
To me it was simply my body but to the world, I was freaky.
Growing up, I became used to the stares, whispers and cruel comments. While my peers ran freely in playgrounds, I was a misfit.
My mum was just 17 when she had me and trapped in a difficult marriage, so I lacked any real support.
But I was rarely at home. By the age of six, I’d had 21 surgeries, as specialists tried to correct my deformities so I could stand and walk like other kids.
My schooling was constantly interrupted by hospital stays, and when I did attend I was painfully aware of how different I looked.
At 14 I went to a boarding school for children with physical disabilities. There I found friends, and teachers encouraged me.
I thrived, gained confidence, and began to see a future.
READ MORE: ‘Drue was left paralysed after a night out dancing’
After another operation, where a titanium screw was inserted into my leg, infection set in and sepsis spread rapidly.
Doctors did everything they could, but had no choice but to amputate.
Now, here I lay staring at the shoes I’d never walk in again, legless, but alive. Seeing the small remaining stumps, I was terrified.
When the doctor came in, his words were chilling.
‘You’ll need care for the rest of your life,’ he said.
In that instant, a flame ignited inside me.
Determined that wouldn’t be my fate, I threw myself into brutal rehab, relearning how to sit, balance, go to the bathroom and get dressed. Even holding myself upright was impossible at first, but I refused to give up.
Returning to school four weeks later, getting around in a wheelchair felt cumbersome.
Later fitted with prosthetics, they proved painful and restrictive because I just had thin nubs left.
So I crawled, which proved to be quicker and easier.
Surprisingly, it wasn’t exhausting for me and didn’t cause any discomfort as I used push-up bars or shoes to cushion my claws.
Then, one day, I spied a small rolling board with wheels that was used to move furniture in the corner of the room.
READ MORE: ‘Olly’s made more than 76,000 wheelchairs for kids in need’
Suddenly, I had an idea.
Putting a cushion on top so I didn’t slip off, I got onto it and pushed forward with my hands.
‘It works,’ I trilled to myself, gliding around.
Upgrading to a skateboard that a friend gave me, my movements became more controlled until it felt like an extension of me.
Along footpaths and through shops, my arms and the wheels did the work my legs once did.
‘Do you need help?’ people would ask.
‘No, I’m fine, thank you,’ I’d reply.
As my independence grew, so did my confidence.
In front of the mirror, I began to see not what I’d lost, but what I had.
‘You might be half,’ I’d tell myself, ‘But it’s a pretty good half.’
Although tough finding employment, I eventually landed a job in retail, and in 2014, I received a Facebook message from a guy called Dennis, a high school teacher.
I lived in Hagen, Germany, and Dennis was in Stuttgart 400km away.
READ MORE: ‘I conquered Mount Kilimanjaro… in a wheelchair!’
We began emailing, then chatting over the phone.
We got along great.
‘I don’t have any legs and my hands are deformed,’ I told him one day.
‘I don’t mind,’ Dennis replied.
When we met, there was no awkwardness.
Dennis loved me for me.
As our relationship blossomed we shared overseas adventures to Italy, Kenya and New York.
But travelling with no leg wasn’t always easy. Cobbled streets, crowds and stairs came with challenges, but none I couldn’t conquer.
Sometimes Dennis carried me, sometimes I crawled, or rolled on a board Dennis’ dad made for me. It was amazing.
Back home, we tied the knot in 2018.
Dennis’ family welcomed me warmly, especially his mum, who shared my love of fashion.
‘We should open a boutique!’ she suggested one afternoon.
‘You can’t use a computer and I’m a cripple… great idea,’ I laughed.
But we did it! Opening our fashion outlet made my dream a reality.
Then another dream came true when, in 2019, I fell pregnant.
Our son, Rangi, was born via C-section in May 2020.
‘So this is love,’ I whispered.
Once home, I adapted motherhood to suit me.
My father-in-law built a small basket on wheels so I could easily move Rangi while I was crawling, and, as usual, I’d just pull myself up onto normal-sized chairs, tables and the kitchen top to prepare bottles, change nappies and lift Rangi in and out of his cot.
As he grew, at the playground I climbed, crawled and played alongside him.
‘Mummy, faster,’ he’d squeal, riding on my lap as I zoomed on my skateboard.
Now five, Rangi is kind, confident and full of joy.
He doesn’t see me as different – just as Mum.
A mother, wife, business owner and advocate for people with disabilities, I’m proud of who I am. Wanting others to feel the same, I share my journey online.
You’ve given me hope, one person wrote.
You’ve changed how I see myself, said another. You’ve shown me what’s possible.
I’ve built a life beyond my wildest dreams.
‘Anything is possible,’ I tell Rangi.
‘Even when life is hard… keep going.’
I was never half a person. I was always whole – just in my own way.
