'Since I was 10-years-old I was a medical mystery': Auckland teen raising funds for life-saving surgery

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 pain and 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.

"I'm basically always in pain," she said.

"My head is always sore, but it gets really bad with any kind of pressure, so sometimes I can't even bend down or look to the floor.

"I can't be left alone at all in case I pass out, and sometimes my legs give out as well and I just fall to the ground which is quite dangerous.

"My mum basically has to be with me all the time and I have to sleep with her because I have really bad sleep apnea."

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."

She said the surgery means everything to her because it is "basically my whole entire life".

"The surgery is definitely life-saving. If I don't get it, not a lot of people with Chiari survive to an old age.

"It is my life that we are talking about and the surgery eliminates sudden death which would be such a big weight off my family's shoulders.

"We are hoping up to 80 per cent of my symptoms will improve – which would be amazing."

The family has set up a Givealittle page to try and raise the $80,000 they need to send Miles and her mother to Spain for the surgery.

Money will be used for surgery, flights, accommodation, transport, and any other essentials related to the surgery.

"Of course there is no way on a sickness benefit I could fund myself to get there and my family is not wealthy," the page reads.

"Please donate today every little bit is appreciated it means everything to me, and my life is counting on it."

Brooke Miles said any help would be appreciated.

"We are desperate and I am not in to begging, but the situation is requiring it. It is awful."

*Go to LIFE SAVING HOPE FOR MICHAELA to help Michaela Miles get to Barcelona for her life-saving surgery.