By XAVIER SMERDON
ALEXANDRA Miller’s parents have not told their four-year-old daughter that she will only live for a maximum of two more years.
Last month the cheeky and mischievous child was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), an extremely rare tumour located in the middle of the brain stem.
It only effects children and is incurable. Only three cases are seen by doctors at the Royal Children’s Hospital every year, and little Alex just the second person to be diagnosed this year.
“We’ll never forget when we found out,” Alex’s father Andrew said.
“It hit everybody really hard.”
With an infectious laugh and a cheeky way of getting what she wants, you would never know that Alex is in the middle of the fight of her life.
Just over a year ago Alex was taken to a doctor when her left eye started to turn inwards, and her parents were told it was most likely a muscle or nerve condition.
As more tests were done and she was prepared for an operation, it was discovered that she actually had the rare tumour.
“It just broke our hearts,” her mother Eva said.
“I was in total disbelief and shock. I just remember thinking, how can you not operate on it? Why can’t you fix it?”
As soon as Andrew Miller heard of his daughter’s condition, he flew back home from his interstate job as a crane operator, handing in his resignation immediately.
The most optimistic diagnoses so far has been that Alex will only live for another two more years.
Andrew and the rest of the family said they just want to spend as much of that time as possible with Alex, creating lasting memories.
“I was a dribbling mess for ages when I found out. I couldn’t even look at someone without breaking down,” Eva said.
“It was like being given a daily pass to hell. You always want to protect your kids but this is something you can’t do anything about.
“But you’ve just got to pick yourself up and start laughing and smiling with her to make sure that she is happy.”
While Alex receives almost daily treatments of radiation to try and stunt the growth of the tumour, as far as she knows, she is only going to hospital to try and fix her eye.
“It would be really hard for an adult to face their mortality, so how do you tell a four-year-old that they won’t live much longer?” Eva said.
Eventually Alex will lose her mobility and control of her facial muscles, but in the meantime her siblings Tessa, Shana, Ash and Brooke are doing everything they can to keep a smile on their little sister’s face.
For now Alex is living the closest thing possible to a normal life and last week she told Star that her favourite thing to do was to draw rainbows and to play with her new pet guinea pig.
But with Andrew having to sacrifice bringing in a pay cheque for spending time with his daughter, medical bills are piling up.
“With my job I’ve been away quite a bit to try and provide for the family, and we’ve been limited as far as dad and daughter time goes,” he said.
“Now none of us are working but we still have a house to run, and you can’t lose sight of that, so it’s always in the back of your mind.”
A bank account has been set up in Alex’s name so donations can be made.
For more information visit www.facebook.com/theraceforalex or to donate money use the PayPal account Alexandra Miller or email miller530@gmail.com
