Lorraine Hollins, 44, shares her true life story;
I was sitting on the bus with my toddler, Sophie, when I noticed an old lady staring at me in shock.
“My goodness, look how long her fingers are!” she bleated.
My cheeks blushed crimson as I realised the woman wasn’t talking about me, but my daughter.
Soon, all the passengers were ogling Sophie like she was some kind of freak.
I’d first spotted her slender – and very long – fingers the day she was born.
As the nurses passed her to me in a bundle, a hand poked out from her blanket.
But it wasn’t just her fingers that were lengthy, her body was long, too.
The newborn onesies I’d bought were useless. She immediately went into size three months plus.
Doctors were concerned. Although they couldn’t pinpoint exactly what the issue was, they wanted to keep a close eye on my bub.
By six months she easily looked like a one-year-old.
Her vision had also deteriorated and she could barely see my face.
Not long after, Sophie was finally diagnosed with Marfan syndrome, a genetic disorder that affects the body’s connective tissue and causes long limbs.
In many cases, it’s genetic, but we had no family history of the condition.
Doctors were baffled.
The diagnosis hit me hard and, for a while, I fell into a deep depression.
“What sort of a life will she have?” I wept to friends.
The Marfan syndrome had also caused Sophie’s lenses to dislocate, effectively blinding her.
The day she was born I knew something was very different. Pictures exclusive to Take 5.
Realising I had to be the best mum I could, I got out of my slump and helped prepare Sophie, now two, for surgery to restore her sight.
“I love you,” I choked afterwards as she giggled up at me, finally able to see my adoring face.
Later that year I gave birth to another child, Aaron, and breathed a sigh of relief when he didn’t show any signs of Marfan syndrome.
Sophie had many challenges ahead, so I started explaining the condition to her.
“You’re special,” I told her repeatedly. “You look different. People might stare at you in the same way they stare when they see something beautiful.”
She would nod and smile, but it didn’t lessen the blow of hearing it every day.
By age six, Sophie was over 120cm tall, making her the tallest six-year-old in the country.
As word spread, there were some mothers who showed their nasty side.
“Jane’s mum says she can’t play with me,” Sophie sobbed one afternoon. “She said she might catch what I have.”
I was incensed.
Thankfully, Sophie managed to form a close group of friends who were really protective.
If anyone tried to bully her for her height, they’d step in.
Over the next couple of years Sophie shot up too quickly for her small frame.
“Mum, my new jeans are too small,” she complained.
“But I just bought them!” I said with a sigh.
By eight she was an incredible 174cm tall.
She’d grown nearly 30cm in two years – it was her biggest growth spurt.
The height difference between Sophie and Marta is stark! Pictures exclusive to Take 5.
Finding clothes proved near impossible.
Money was tight, so she spent years wearing her old dresses as tops.
Even the tightest leggings were baggy on her long, slender frame.
Shoes were a nightmare, too. Sophie lived in Converse trainers which were long and narrow.
But as she approached 10, her thin frame really started to show.
“Anorexic!” strangers scoffed.
Admittedly, her legs looked so thin I worried they’d snap.
But anorexia? No way! I’d seen her polish off an entire large pizza in one sitting.
“If she keeps growing at this rate, it’ll mean more pain for her,” a specialist warned. “This world simply isn’t made for the super-tall.”
Sophie’s condition meant she’d also developed scoliosis, an abnormal curvature of her spine, causing her agonising back pain.
A specialist suggested two things.
First was surgery to smash the growth plates in Sophie’s knees.
Then, she’d need to be put through early puberty to stop the growth spurts that come during the teen years.
“Puberty can be tough,” I told her, “but it’s going to happen sooner or later.
“Maybe it’s best to get it over with,” she agreed.
So we went ahead with both options.
Sophie can easily touch the ceiling. Pictures exclusive to Take 5.
Once she’d recovered from the surgery, we headed off on holiday with Aaron and my brother Ash.
But Sophie was unusually moody. One night, she burst into tears for no reason.
“What’s wrong, sweetheart?” I asked.
We were supposed to be having the time of our lives.
Then it hit me: after months of hormone treatment, puberty had set in.
I bought her some training bras.
At first Sophie hated being the only girl amongst her friends with her period.
But by 12, some of her friends started catching up.
Sophie’s body has filled out, too.
Now at 76kg, she’s in size 12-14 clothes.
She still dresses sporty but loves being able to fit into skinny jeans.
Sophie stopped taking the hormones a couple of months ago.
We’re hopeful she’s reached her final height of 189cm.
For a 12-year-old, that’s still incredibly tall – 45cm taller than many of her peers.
In fact, Sophie’s believed to be the tallest pre-teen girl in the world.
She’s been invited to apply for a Guinness World Record, as they don’t know of a pre-teen girl who is taller.
Me with Sophie and Aaron. We’re so proud of her! Pictures exclusive to Take 5.
While we’ve all adjusted to Sophie’s condition, it still takes strangers by surprise.
One cheeky boy at school called her a giraffe.
“I love giraffes,” Sophie smiled, determined not to let it get her down.
We’ve come to believe that giraffes have the Marfan syndrome of the animal world and Sophie clings to that.
I’m proud to say she’s much better at handling the staring than I was.
She gets countless comments and questions about her height.
But she’s incredibly confident, and always looks on the bright side.
0“Hey shorty!” she teases me, laughing at my 164cm frame.
When she notices people staring, she tells them up front: “I have Marfan’s syndrome. It makes me very tall.”
All she wants is for people to treat her like a normal girl, because that’s what she is.
Sophie might look different, but that doesn’t change who she is inside.
