A young girl born without the ability to move her face has come a long way through resilience and just getting on with life, her mum says.
Mela Trayes, 11, was born on August 18, 2009 at Auckland’s North Shore Hospital.
Mum Mishla Trayes said following the birth, Mela was “raspy”, and she noticed her mother and midwife having a close look at her.
Shortly after birth, the newborn was whisked away to the special care baby unit because she wasn’t breathing properly.
Hours later, Trayes said a doctor told her and her husband they believed Mela had some sort of syndrome, but they couldn’t pinpoint what it was.
The next morning, a geneticist looked at Mela and confirmed a diagnosis.
“He said ‘she has something very, very rare. It affects about one in four million people, and it’s called Moebius syndrome’.”
According to the National Organization for Rare Disorders (NORD), Moebius syndrome is a rare neurological disorder that causes paralysis in the face.
For Mela, it meant she would struggle with breathing, feeding and her speech. She was also born with a cleft palate and a small left thumb – symptoms of the syndrome.
NORD said the cause of the syndrome is unknown, and it occurs randomly in most cases.
Mela spent months in Starship Children’s Hospital as a baby. Trayes said she would turn “purple-blue” because she couldn’t breathe.
While in hospital, Mela had surgeries to put in a tracheostomy, a Mic-key button for feeding, and to repair her cleft palate.
“We went through many, many, many surgeries, I think she has had 25 or 26 now in total.”
Just a few years ago, Mela underwent her last surgery, which has helped her to smile.
Muscle was taken from the side of her leg and implanted into her face.
“Now she can smile which is pretty cool.”
Trayes said the diagnosis has been really tough on Mela but she “just totally gets on with it”.
When her daughter was about a year old, Trayes said she and her husband had a serious conversation about how they were going to deal with whatever was thrown at them.
“We just decided she was going to do everything, and it was too bad, and she’d just have to get on with it.
“Sometimes I’m sure Mela has thought we have been a bit tough, but she’s literally done everything at school including cross countries. We’ve just spent two weeks in Queenstown, and she’s been skiing like a demon.”
Mela’s primary school years were tough and some kids were mean, Trayes said.
“In general, it’s just sort of snide, nasty passing comments that we’d get.
“You’ve got to have backbone, you’ve got to let it wash over you. It hurts, and it’s not nice, but I think the best thing is to move forward and let a lot of it go.”
A couple of years ago, Trayes said she was approached by Cure Kids and asked if Mela wanted to be an ambassador.
They were on board from the start – fully believing in what the charity strived for.
Trayes said it was an “awesome charity” really close to her heart, and being involved made Mela feel special.
“It encompasses so many things and actually helps so many New Zealand children. It’s not specific which I think is important. It can help so many children with so many ailments and illnesses.”
To support the charity’s annual Red Nose Month in July, courier company Aramex had Mela and younger sister Boe redesign its A3 and A4 satchels.
They were tasked with coming up with a drawing that was bright, cool, and colourful – and both sisters were happy with what they had come up with.
Aramex said it would donate 50 cents from every sale to Cure Kids throughout July, with 70 per cent of the satchels already being sold.