Kate Gulo seemed like your average, adorable toddler, running around with a heightened curiosity but a lack of balance. Now, as she nears her 2nd birthday, what at first seemed like typical toddler falls has become the center of a rare diagnosis.
Kate, a “one in a million little girl” as her family calls her, suffers from Opsoclonus Myoclonus Syndrome, a rare inflammatory neurological disorder that affects one in a million people worldwide. Her family is hoping to raise awareness for the condition that has quickly changed their daughter’s life.
Kate’s parents first noticed her stability troubles back in October, when they said “she seemed off balance and wasn’t able to walk properly.”
“Within a couple of weeks we really noticed it really was not just toddler falls,” Teresa Gulo, Kate’s mother, told NBC 5. “It was just really out of the ordinary.”
That's when Kate’s condition began to worsen – and quick.
“Kate went from an always moving toddler to one who could not even sit without falling,” Gulo wrote on Facebook.
According to the American Academy of Ophthalmology, symptoms for the rare disease include an inability to walk or sit normally, behavioral and sleep disturbances, irritability and abnormal eye movements.
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Kate was misdiagnosed for more than three months after her symptoms began. It wasn’t until her parents took her to Chicago’s Lurie Children’s Hospital for a second opinion in February they finally received some answers.
“We were relieved when her scans had come back normal with no tumors, but the doctor had said, ‘I want you to know this is still a very serious diagnosis,’” Gulo told NBC 5.
Kate has since begun treatment, including hours of physical and ocupational therapy among other things. As part of her treatment, Kate's immune system is surpressed. So much so, that Gulo has taken time off work to stay home with her daughter “to keep Kate as healthy as possible.”
“A simple cold could potentially last much longer than normal and trigger a relapse in her OMS symptoms,” Gulo said.
The family and their supporters have set up a GoFundMe page to help with Kate's ongoing treatment and medical bills.
Though Gulo said Kate is doing better following the start of her treatment, there are still many unknowns ahead for the child.
“Kate is a stubborn, persistent, and amazing little girl,” Gulo wrote. “And though we know OMS will never get the best of her, it will cause challenges for her, possibly for the rest of her life.”
In addition to potential cognitive troubles later in life, in some cases, the disease can also lead to neuroblastoma, a type of cancer that often forms in nerve cells.
“We’re hoping that Kate’s was caught quickly enough that she won’t have too much permanent damage,” Gulo said.
Looking back, Gulo said there was one thing she wishes she had done sooner -- sought a second opinion.
“I would say for other parents, you know your kids best. If you feel like there’s something more or something is missing from what you get from your doctors, don’t stop looking,” she said.
