Michaela Miles, 19, is raising funds for life-saving surgery after being diagnosed with a Chiari Malformation of the brain. Photo / Supplied
Michaela Miles, 19, is raising funds for life-saving surgery after being diagnosed with a Chiari Malformation of the brain. Photo / Supplied
A young Aucklander who has been fighting a debilitating illness for 10 years is trying to raise funds for life-saving surgery.
Michaela Miles, 19, has been housebound and unable to leave her mother's watch since she was a child - due to a condition that leaves her in severe painand at risk of death.
For the past 10 years, Miles has suffered excruciating headaches, pain in her neck and back, immense fatigue, short-term memory, loss of balance and hand eye coordination, swallowing issues, bladder issues, muscle weakness and sleep apnea.
As a child she was unable to attend school and could hardly ever have friends over, now as a teenager she is primarily housebound and in the fulltime care of her mother.
It wasn't until recently that Miles found out that all of these symptoms were caused by a brain malformation called Chiari - a condition in which brain tissue extends into the spinal canal.
Michaela Miles, 19, has been housebound and unable to leave her mother's watch since she was a child. Photo / Supplied
"Since I was 10-years-old I was a medical mystery, until a year ago when we found out I had a Chiari Malformation of the brain which is life threatening," a Givealittle page set up for Miles states.
"We were shocked but relieved we had found an answer to a lot of my symptoms."
Miles' mother, Brooke Miles, spoke with the Herald and said at first she was relieved to know what was causing a lot of her daughter's symptoms, but then the relief was crushed when they found out she could not be treated in New Zealand.
"I was a bit mortified that there wasn't the help here that we need," she said.
"It is like having a carrot dangling in your face and it is just out of reach. We know that every day counts and every day she wakes up I am grateful, and every night she goes to sleep I am fearful.
"I live in fear to be honest. I am trying to get on with it and live every day and try to be happy, but everything has had to be modified. We can't go on holiday and we aren't functioning like a normal family."
The only place in the world that does the Filum system, which is the surgery that Miles needs, is in Barcelona Spain.
"This surgery is not a cure but it will help to decrease my symptoms and eliminates the risk of sudden death," she said.
"This illness is progressive and is progressing fast and if I don't get this surgery soon my symptoms could become permanent."
