HARTFORD, CT (WFSB) -- It’s been a very long battle for a little girl battling a rare disease.
At 19 months old, Lily Malinowsky has already fought more health battles than most adults.
She was diagnosed with a rare autoimmune disease called Systematic Juvenile Idiopathic Arthritis.
It started in September when she couldn’t break a fever.
“When you know something is wrong, I can’t describe the feeling, you just know something isn’t right,” said Lily’s father Luke Malinowsky.
That parental instinct eventually brought them to the Connecticut Children’s Medical Center, where Lily was diagnosed with the very rare disease.
“At first we were scared because we didn’t know, we felt lonely,” Luke said.
That diagnosis was just the beginning.
“Turns out about 10 percent of kids with systemic arthritis develop a complication where their bodies start to produce a lot of inflammatory proteins and start attacking different organs. So, we were managing that for several months and then it started attacking her lungs so she developed breathing difficulties,” said Dr. Lawrence Zemel, chief of Pediatric Rheumatology.
That landed Lily back in the intensive care unit.
She’s now fighting another rare condition called HLH, which doctors here have treated before, but never in someone this young.
She didn’t respond to traditional treatments, so they are now trying a new drug from Switzerland, which is showing promise.
“She’s not out of the woods but she is slowly improving so we are keeping our fingers crossed,” Zemel said.
Now it’s the little moments that keep them going as they strive to meet bigger goals, and cling to Lily’s middle name…Faith.
“It gives us a lot of hope, because if you don’t have hope what’s the point of even fighting,” Luke said.
The family has set up a GoFundMe page to help pay their medical expenses, which can be found here.