Photos: Teen born with rare disease is finally living a normal life after facial surgery Photos: Teen born with rare disease is finally living a normal life after facial surgery
She can’t remember the early days, but knows she was in hospital a lot. In fact, for most of her life hospital has been like... Photos: Teen born with rare disease is finally living a normal life after facial surgery

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She can’t remember the early days, but knows she was in hospital a lot. In fact, for most of her life hospital has been like a second home for Lilli Sim.

Born with Craniofrontonasal dysplasia (CFND) – an incredibly rare disease affecting one in 120,000 babies – Lilli has long battled issues with facial symmetry, breathing, balance and schoolyard bullies.

But despite her struggles, the brave 19-year-old from Moe, Victoria, is now on the road to ‘normality’, recently undergoing major surgery to repair her face – a miracle considering doctors initially told her parents she would only live for a few months when she was born.

Lilli the brave: Lilli Sim, 19, was born with Craniofrontonasal dysplasia (CFND) a rare disease that affects just one in every 120,000 people

Lilli the brave: Lilli Sim, 19, was born with Craniofrontonasal dysplasia (CFND) a rare disease that affects just one in every 120,000 people

Long journey: The condition affected her facial symmetry, breathing, balance and also muscle tone, forcing her to be a regular visitor to the Royal Children's Hospital in Melbourne
Fight for life: 'They were telling us she¿d only survive until she was three months old,' Lilli's mum Julie Sim told Daily Mail Australia

Long journey: The condition affected her facial symmetry, breathing, balance and also muscle tone, forcing her to be a regular visitor to the Royal Children’s Hospital in Melbourne

‘When Lilli was born they did testing and it came back that she had Cohen’s syndrome,’ her mother, Julie Sim, told Daily Mail Australia.

‘That was a shock because they were telling us she’d only survive until she was three months old, but more genetic testing at four weeks told us she actually had CFND.’

Regularly ‘in and out’ of hospital, Lilli had her first major surgery at six months old and at four years old had her eyes moved together and the bridge of her nose built up.

In fact, so common were Lilli’s trips to hospital that it’s seemingly only the major surgeries that she really counts.

‘I was in and out of hospital quite a bit and I got moved to the ICU at the Royal Children’s Hospital in Melbourne when I was three days old,’ Lilli told Daily Mail Australia.


‘I had appointments a lot, twice weekly I think, until I was five.’

But despite the surgery, the affects of her condition made some things difficult – such as making friends at school.

‘Once she got to high school the kids were a lot more accepting,’ Mrs Sim said.

‘At primary school she didn’t have many friends apart from one or two of her cousins. Sometimes being kids they were being pressured and she was bullied and teased a lot.’

‘Her granddad was terrible, he used to go down there at lunch time and talk to her because he didn’t want her to be on her own.

Making a difference: After all her reconstructive surgeries Lilli is now hoping to get on with her life and wants to study social work at university so that she can help others facing difficulties like her

Making a difference: After all her reconstructive surgeries Lilli is now hoping to get on with her life and wants to study social work at university so that she can help others facing difficulties like her

Giving back: Lilli and mother Julie (pictured left) took part in Run for the Kids to raise money for the Royal Children's Hospital, a hospital that has been a huge part of her life

Sporting star! A keen netballer with the Moe Football and Netball Club, Lilli is pictured here with legendary AFL coach Kevin Sheedy

Giving back: Lilli and mother Julie (pictured left) took part in Run for the Kids to raise money for the Royal Children’s Hospital while she has also met legendary AFL coach Kevin Sheedy (pictured right)

Devastating news: When she was born Lilli's parents Julie (pictured left) and Lachlan (pictured middle right) were told by doctors that their daughter would only live for a few months

Devastating news: When she was born Lilli’s parents Julie (pictured left) and Lachlan (pictured middle right) were told by doctors that their daughter would only live for a few months

‘I said “Dad, you can’t do that”, because as tough as it is she has to learn on her own.’

But while it was a big deal for her family, it clearly didn’t bother Lilli.

‘I copped a lot of staring and I still do, but it doesn’t really phase me,’ she said.

Through hobbies such as ballet and netball, Lilli has been able to surround herself with a close group of friends.

And when dealing with issues around muscle tone and balance, these activities assisted in her to develop.

Major reconstructive surgeries over the past four years have also had amazing results.

‘My third major surgery was when I was 16 and I had jaw surgery,’ Lilli said.

Thick as thieves! Lilli and her younger brother Harri (pictured above) have formed a tight bond over the years

Thick as thieves! Lilli and her younger brother Harri (pictured above) have formed a tight bond over the years

Long journey: Lilli's surgeries have included having her jaw broken and realigned

All grown up! Those setbacks haven't stopped her from living life and she proudly shows off her P-plates after receiving her drivers licence

Long journey: Lilli’s surgeries have included having her jaw broken and realigned (pictured left) but that hasn’t stopped her from living life and she proudly shows off her P-plates after receiving her drivers licence

‘What they did was break both jaws and move my front one forward so I could have a proper bite.’

‘And now I’ve just had my nose reconstructed where they took a bit of my ribs and cartilage and put that in my nose to give my nose more of a bridge and to help me breathe.’

Removing the bandages in June revealed not only a new face, but also a new lease on life for Lilli.

Set to turn 20 next Monday, she is currently completing a TAFE course and has her sights set on going to university next year.

Thumbs up! Lilli and brother Harri give a thumbs up after her recent reconstructive nose surgery

Thumbs up! Lilli and brother Harri give a thumbs up after her recent reconstructive nose surgery

She says she wants to qualify as a social worker to help others as many have have helped her in her life.

‘I’ve always had a passion for social work and I want to go and study a bachelor of social work at RMIT,’ Lilli said.

‘Having one myself and so I guess I just want to share my story with others and make a difference to other kids lives that went through things similar to me.’


Henry Okafor

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