“Red Nose Day makes me smile. It makes me think of all the cool scientists trying to find cures to help find cures to help kids like me,” Mela, aged 11.
Mela is diagnosed with an incredibly rare condition called Moebius syndrome.
Mela was born on the 18th of August 2009. After an uncomplicated pregnancy and labour, Mela’s parents were surprised to realise their baby was struggling for breath. Mela was quickly taken to the SCBU where she was diagnosed with an incredibly rare condition called Moebius syndrome.
Moebius syndrome is a rare neurological condition that primarily affects the muscles that control facial expression and eye movement. This meant that Mela’s face was paralysed and that her eating and breathing were affected.
Mela’s mum recalls, “We pretty much moved into Starship when Mela was about 4 weeks old. She had a tracheostomy placed and a mic-key button to help with breathing and eating. We had MANY close calls, intensive care stays and ambulance rides as the amazing teams at Starship fought to keep her alive.
“Mela’s first year was definitely the hardest. We didn’t know what we were in for and what the end result would be. It was incredibly heart breaking but devastating to watch your child have multiple operations and procedures to just try to stabilise her.”
A resilient and courageous child, Mela didn’t give up a fight. She started to gain weight and thrive, and is now a 9 year old who is doing amazingly well. In 2018, Mela went ahead with a very specialised surgery to give her a ‘smile’. This involved taking a large muscle out of her leg and implanting it in her face. Mela will have the other side done in 2019.
Mela has a little sister called Boe who she is very close to. Their family live each moment to the full.
“As a family, we have truly learnt what is important in life and what really matters. Life is short. Live each moment. Go on the holidays, drink the champagne. The special occasion is being here today,” says Mela’s Mum.