SPOKANE, Wash. - Some of the children at Sacred Heart Children's Hospital are stuck for weeks on end, or have to come in on a weekly basis to receive life saving treatments. That's what Ava has to do.
"Today I'm supposed to be at school, but I can't," said Ava.
Once a week the eight-year-old spends the day hooked up to a machine at Sacred Heart.
"Ann comes in and brings a ton of are stuff and you just get to do are with her," said Ava.
Art therapy helps her forget about why she's at the hospital. She has MPS4, a rare metabolic disorder.
"MPS4, I have a trick if I forget what I have it's M-P-S and what's the next number? 4!" she said.
Children with this disorder are missing an enzyme that breaks down sugars in the blood cells.
"So this is my line, it's hooked up to that and it goes through here and goes into my port which goes into my blood cells," Ava explained.
Ava's port allows her to have the enzymes she's missing infused into her blood every Thursday without the stick of an IV needle.
"The medicine that gets put in here acts like a garbage man and cleans out all the sugar," she said.
While the infusions help with Ava's pain, they can't stop the skeletal abnormalities of the spine, neck and chest as well as hip and knee dysplasia that comes with MPS4.
Ava has already had surgery on her legs, "So this surgery was to take out the plates because they were over correcting. So now they are correcting again and now they're going to stay this way and they're perfect!" said Ava.
Ava has had three surgeries, one to get her port placed, one to have plates put inside her legs, and the most recent surgery to take those plates out.
At eight-years-old, Ava is the age that most MPS4 kids stop growing completely.
"Usually people don't grow past eight but today I grew!" said Ava, "Two centimeters and a half a centimeter!"
A victory for Ava today, but not every day ends with a smile.
"With Ava, what you see is what you get," said Ann Walker, Sacred Heart's art therapist. "Sometimes she is going to be really feisty and sometimes she's going to be very fun and sweet. The day that I was working with Ava, she was mad. And she has every right to be mad. None of these kids want the illness they have. None of these kids want to be in the hospital."
While her growth will stop and her bones will become brittle, her dreams of a bright future will not.
"I either want to be a singer or a designer," said Ava, "a pop star... if I don't become any of those, I want to be a zookeeper or a veterinarian."
In reality, children with severe forms of MPS may not live past 30.
But for now, Ava's future is bright, it's filled with the dreams and goals of an 8-year-old girl, who won't let her illness hold her back.