- At 18 months old, Carly Ruhnke was diagnosed with Morquio A syndrome which affects the growth of cartilage, bones and connective tissue.
- She has had 30 operations so far, including a trachea – or windpipe – reconstruction to manage the condition.
- But, Carly never let her condition defy her confidence and she continues to shine on and off the runway!
Here Carly Ruhnke, 30, tells her story in her own words.
Staring down the catwalk, I felt like a million bucks.
It was 2021, and as I twirled in my black halter-neck dress, I’d never felt more beautiful. But unlike typical models with long, lean legs, I was only 91.5 centimetres tall.
At 18 months old I’d been diagnosed with Morquio A syndrome – a rare and progressive disorder that impacts my body’s ability to produce an adequate amount of enzymes to break down specific sugar molecules, which affects the growth of cartilage, bones and connective tissue.
Because of this, I suffered skeletal and growth abnormalities, joint pain, and challenges with my mobility.
Genetic testing revealed both my parents, Carol and Ed, were carriers of the disorder. But they were unaffected, as were my siblings, Kristen, then nine, and Ed, five.
At just two and a half years old, I’d had my very first surgery – a gruelling 16.5-hour op where surgeons fused 11 discs in my upper neck and back.
And it didn’t stop there.
READ MORE: WA teen blinded by a magpie as she walked to school
By the time I was 10, I’d had metal brackets placed on my hips and staples in my ankles to help me walk.
‘You’re our brave little fighter,’ my parents said, doting on me.
My siblings were also my biggest supporters, and despite my limitations, they made everyday life feel normal. From playing in the garden to going on fun road trips, they always made sure I was included.
Despite the support I felt at home, kids at school were less kind. Picking on my unique appearance, some children teased me with cruel names, such as ‘chicken nugget’.
But I refused to let the bullies’ cruel taunts scar me – I was the bigger person and never let anyone make me feel small.
As I got older, my organs still grew at the average rate for my age but, because of my short stature, they were being pushed down into my gut which made my belly protrude.
Aged 12, I joined Little People of America (LPA) – a not-for-profit group supporting people of short stature. Making friends with people of the same height who all had similar experiences to me, I felt truly seen.
At 15, I joined my school’s cheerleading squad. Dancing along with my peers, I felt so empowered.
READ MORE: Wildlife warrior: ‘I found love at the zoo’
And at 20, I began weekly enzyme replacement therapy to help manage my condition.
In time, when my friends started to date, I hoped I’d find Mr Right too. Sadly though, I didn’t have the best of luck with men.
Still, I didn’t let those experiences knock my confidence.
And I certainly didn’t need to be going on dates for an excuse to dress up.
While it’s sometimes tricky finding adult clothes to fit my body, I was delighted when Cathy, the owner of a local dress shop agreed to help style me personally.
Picking out sparkly sequinned dresses and platform heels, she altered the clothes to fit my proportions.
‘You’re my biggest littlest inspiration,’ she warmly smiled as I twirled around in my gorgeous frocks.
While I sometimes get curious stares from people in public, I don’t mind.
‘I have Morquio syndrome,’ I explain to strangers, trying to spread awareness of my form of dwarfism.
READ MORE: Brave Bobby Webber: Mum’s fight for justice 11 years on
When LPA asked me to model at some of their events, I jumped at the chance.
Striking a pose at the end of the runway, I was delighted to see my brother in the audience.
‘Go, Carly!’ he beamed proudly.
It was an awesome experience.
My health has been mostly stable, but I have diverticulitis – inflammation in the pockets on the inside of the colon – which can cause terrible
flare-ups.
Thankfully, my parents, who I still live with, and my siblings, are always willing to help me.
At home, I try to walk around with my walker as much as possible, and outside I rely on my mobility scooter, or friends and family will kindly drive me places.
My gorgeous family even installed smaller furniture, including shorter cabinets and a mini fridge, to make it easier for me to access the things I need.
So far I’ve had 30 operations, including a trachea – or windpipe – reconstruction, because my ability to breathe was impacted. As my organs are too big for my body, my trachea had grown too long. Before the op I constantly had to put my head back in order to breathe.
I sounded like Darth Vader from Star Wars when I breathed and it was also very uncomfortable.
Since my surgery, it’s made such a great difference to my life.
In the future, I might need a lower back fusion or a hip replacement, depending on how my body does.
While I currently work casually as a hostess, I’d love to see myself at New York Fashion Week someday, with the big lights beaming down and music playing as I strut my stuff on the runway.
I know no matter where life takes me, my family will be there to encourage me at every step.
Knowing I have their love and support gives me the confidence to stand tall, and be proud of the skin I’m in!
