Girl with rare facial condition undergoes remarkable transformation through surgery


To 19-year-old Lilli Sim, hospital till now was like a second home. No! She wasn’t suffering from cancer or undergoing chemo, it was much worse than that! Lilli Sim was painstakingly undergoing reconstructive surgery for a completely deformed face.

Diagnosed with a rarest of rare diseases, Lilli Sim was one of those, one in 120,000 babies born with Craniofrontonasal Dysplasia (CFND) disfiguring her entire facial symmetry. It brought upon her one hell of a life filled with breathing problems, social stigma, bullying and constant medical intervention. Today this girl with the rare facial condition is thankful, to be on the road to recovery.

1 At birth she was given just three months to live

Lilli Sim from Moe in Victoria, Australia can’t really recollect much of her childhood. What she did know was that she spent a lot of time in the hospital, undergoing treatment for her rare facial abnormality named Craniofrontonasal Dysplasia. After several reconstructive surgeries, which definitely was an ordeal for little Lilli, doctors stated she is now going to be normal which is a miracle and you know why? Lili was also diagnosed with Cohen syndrome from birth and had just 3 months to live. Today she is twenty years old.

Lilli Sim from Moe in Victoria

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2 Her parents were in for a rude shock!

For Lilli’s parents, it was a rude shock to learn that their baby was born with a fatal disease that would snuff her life in three months. But, the little stalwart miraculously survived, although, her ordeal wasn’t over. She still had the facial abnormality to deal with. According to her Mom, Julie Sim, her first reconstructive surgery was when she was just 6 months old. The procedure brought her eyes together and the bridge of her nose being almost absent was built-up.

rare disease

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3 Surgery and Therapy Twice a Week for Five Years

Till she was five, Lilli had surgery or medical appointments twice a week. Unfortunately, the corrective surgery was doing little for her social life. It was difficult to make friends and she was always the object of bullying. High school was a bit better. Lili remembered her grandfather visiting her at lunch break just to keep her company. Despite of her predicament, Lilli was a toughie and truly an inspiring young girl. ‘I coped a lot of staring and I still do, but it doesn’t really phase me,’ she said.

Lilli took to sports and hobbies, like netball and ballet as the activities helped her improve her muscle tone. She preferred being among a few close friends only. The past four years have resulted in vast improvements from the various facial reconstructive surgeries she has undergone. As a girl with a rare facial condition, it wasn’t a demotivating factor for Lilli, who even hopes to enter University next year.

Lili took to sports netball

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4 Major reconstructive surgery when she was sixteen

At 16, Lilli underwent major corrective surgery. Her jaws were broken with the front being moved forward so that she could experience a normal bite. Her nose underwent a final reconstruction where the bridge was improved upon, using cartilage and bone from her ribs. The corrective procedure helped her breathe easily. Her subsequent transformation was remarkable. It was heartwarming to see Lilli’s personal and emotional transformation from a helpless girl to a determined and resilient young woman.

Lilli underwent major corrective surgery

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5 A Truly Inspiring and Motivating Young Girl

Lilli Sim after surgery

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For this amazing girl with a rare facial condition, her surgeries were more of a pathway to a new lease of life. Now turned twenty, Lilli Sim looks at a bright future for herself and is all set for University in 2017. Lilli has her heart set on becoming a social worker as she desires to help others in need. “I want to go and study Bachelors of Social Work at RMIT,’ Lilli said. She hopes she will make a difference in people’s lives who may have had similar experiences and undergone an ordeal just like hers. Hats off to Lilli Sim, whose fascinating transformation is a truly motivating story as a girl who struggled painfully loving life.

Lilli Sim

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