Mila is a vivacious and sassy teenager lives with a rare, degenerative condition known as Morquio A syndrome.
Morquio A prevents enzyme production needed to breakdown products mainly found in cartilage, which causes short stature, skeletal abnormalities, and pain.
“We first started noticing symptoms six years before Mila was diagnosed,” Mila’s Mum, Luba, said.
“She wasn’t growing like her peers; her endurance was decreasing, and she was slowly losing the ability to do simple activities like running and jumping.
Mila’s pain and disability increased until 2015 when doctors confirmed her diagnosis.
“We were devastated. You spend your life looking after your children, keeping them out of harm’s way but then an irreversible harm finds them and stopping it is beyond your ability,” Luba said.
In Australia, Morquio A affects just 21 people and currently, there is no cure.
Mila requires weekly enzyme replacement therapy plus an exercise regime to slow the progression of her condition, manage her pain and improve her quality of life.
“Since starting treatment, Mila’s endurance has dramatically improved. She is swimming faster, walking straighter and can even break into a very short run,” Luba said.
Now, Mila is adamant she’ll be part of the 5% of children with this condition that live a long and happy life.
“Sometimes, Mila does talk about her fears of living with a degenerative disease, but generally opts to ignore much of what she reads and chooses to rewrite what we know [about her condition] and follow her own journey.”
This year, Mila and her family are supporting the Bandaged Bear Appeal to help raise money for equipment, research and services to find cures for children like Mila in the future.
“The Children’s Hospital at Westmead were there when we needed them most. They fought hard for Mila to ensure we had access to treatment. They knocked down walls and made the impossible, possible,” Luba said.