TESTIMONY. “Moebius syndrome, I was born without the possibility of smiling”

Expressing an emotion, translating a feeling with a smile, a pout, is a spontaneous and natural means of communication for everyone. But not for Tayla Clement who, from an early age, suffered from an extremely rare disease, the moebius syndrome, which affects only one in 4 million people worldwide. This neurological disorder affects the cranial nerves that control facial expression and eye movements. This prevents him from flashing the slightest smile, moving his eyes from side to side, raising his eyebrows or even moving his upper lip.

Very quickly, at school, she became the target of taunts of her comrades, who systematically keep her away from playground games, birthdays and their exchanges. “Children would come and scream in my face, say they were scared of me, then run away laughing. It wasn’t always easy…” says the young woman from Christchurch, New Zealand, who had been nicknamed “the Droopy face” in reference to the always grumpy comic book dog.

As a teenager, Tayla made six suicide attempts…

At 12, Tayla suffers “a smile operation”. Doctors are trying to transplant soft tissue from his thigh onto his face to recreate facial dynamics. It is a failure and the young girl is desperate. “I spent many years hating my face, wishing I had a ‘normal’ smile. And even wishing I didn’t exist anymore, because it felt easier than being alive. It played a big part in my confidence in myself.” During those terrible years, Tayla made six suicide attempts.

It is sport that will save her. To escape, she began swimming as a teenager. If she manages to win medals, her psychological fragility pushes her to stop competing. Because Moebius syndrome is often accompanied by skeletal abnormalities, Tayla has clubfoot. And when she was 18, the Paralympic Federation of New Zealand noticed her and included her in its team ofathletes disabled regional. Three years later, in 2018, she is a top athlete and achieves a feat by winning the Victoria State competition in Melbourne. Another year later, in March 2019, during the New Zealand national championships, Tayla managed a discus throw of 8.28 m: the world record in her category. The young woman becomes a national icon.

“It drove me to despair, but it also gave me the opportunity to be an inspiration”

Tayla has since left high-level sport, but she continues to encourage people who suffer from facial anomalies, through conferences and by hosting her Instagram account. His neurological disorder? She accepted it. “I am ultimately happy that the operation did not work. Yes, it drove me to despair, but it also gave me the opportunity to be a face and a voice of hope and inspiration for others,” she says. “Now I know I was born to stand out.” And there, in his eyes, we see a smile.

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