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Brave 12-year-old Liwen Miao refuses to let Treacher Collins Syndrome hold her back

With the help of a special hearing aid, Liwen is able to embrace her love of music.

By Lynley Ward
There's nothing schoolgirl Liwen Miao loves to do more than show off her impressive skills on the drums. Seated behind the practice kit in her west Auckland home, the talented 12-year-old strikes up a groovy rhythm to her favourite tracks before uploading her performance to video-sharing app TikTok. She dreams of one day being a rock star.
The lofty ambition brings a smile to mum Lei's face. The confidence and self-assurance is something she has nurtured in her eldest daughter since she was born with Treacher Collins Syndrome – a rare genetic condition affecting bone development in her face.
But mum-of-three Lei is the first to admit it hasn't been an easy ride struggling with major health scares early on in Liwen's life, years of exhausting full-time care and encountering cruel playground barbs over her daughter's appearance.
"It's really, really difficult," she admits, giving Liwen a tender hug as she apologises for saying that.
"I am growing with my daughter," exclaims mum Lei proudly.
Lei, 40, reaches for her daughter's birth book, a neat, handwritten journal documenting the weeks spent in the Neonatal Intensive Care Unit at Auckland's Starship Hospital – starting with the
day little Liwen entered the world on March 27, 2007, struggling to breathe and leaving her frightened young parents in shock.
The Aucklander recalls the terrifying first hours as a new mum, when her pregnancy took a dire turn in the delivery suite and her newborn was whisked to an emergency room for lifesaving treatment.
"She was so tiny and the nurse was using a pump to get air in her mouth. They were holding her arm and leg and not letting her move," Lei tells, before breaking down in tears.
"Sorry, it's hard for me because I saw many tubes coming from her body and all the hands were on her – I couldn't see her face. They only let me stay there for a few minutes and then they took me away."
Recovering after her first ear reconstruction surgery earlier this year.
Later that day, a specialist told the distraught couple their daughter had Treacher Collins Syndrome.
"We had to learn everything about looking after our daughter. On the second day, they did a tracheotomy operation because her chin was too tiny and her tongue blocked her airway. We stayed in the hospital for months because they had to make sure we were able to care for her before we could go home."
Liwen has since undergone numerous marathon surgeries, including jaw distraction to grow and reshape her chin, and most recently, the first of two ear reconstructions using skin grafted from her scalp.
"I can't remember how many operations," admits Lei. Liwen, whose speech is affected by the tracheotomy, a cleft palate and deafness, but who is fluent in sign language, starts counting on her fingers but soon gives up. "More than fingers," her mum laughs.
While battling through the sleep-deprived first years – wth Lei and her husband Jackie, 38, needing to be at Liwen's side day and night to keep a watchful eye on her breathing – fresh challenges awaited outside their home.
It's the brave decision the couple made early on that Lei believes has helped give her outgoing daughter the courage to lead a normal life rather than shy away from the public.
"When she was about two, I took her to the playground. Some kids saw her and started crying because they got a shock and were scared of her," Lei explains.
"Other kids said really bad words to her. She said, 'Mummy, why don't they play with me?' I decided to go there every day so they could get used to her. After two weeks, all the kids started to play with her. From that time, I learnt one thing: Whatever happens, she needs to face it. This is her life. I can't swap for her."
With the help of a special hearing aid, Liwen is able to embrace her love of music.
A decade later, the confident pre-teen stood in front of her new Kelston Intermediate class to tell fellow pupils about herself.
"I am just like you. I am kind, creative and have thoughts and feelings just like you. I love to make new friends, dance, drum and learn about other people," she said, using an electronic device to help give voice to her thoughts.
In the past term she's joined a school music group, rates woodwork as her favourite subject and loves being there so much that she's agonising over when to have her next ear operation so it won't impact on her classes.
Liwen has the support of her family (from left) Lei, Jackie, Jackson, three, and Jessie, nine.
For proud mum Lei, who took a chance to learn more about Kiwi culture and how families parent in TVNZ 2's new series Wife Swap New Zealand, having sweet-natured Liwen in her life is a blessing, despite the rough start.
"I think we've passed the hardest part. I am growing with my daughter at the same time. I'm getting stronger and we are good friends now. And the love from her is amazing. She is really good! I'm glad I made the decision not to hide her away."

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