Kate Gulo, 2, gradually lost her ability to walk, crawl, and sit while developing rage tantrums as a result of rare Opsoclonus Myoclonus Syndrome.
Kate Gulo, two, learned how to walk just before she turned one and would run, jump and dance everywhere at first.
Kate Gulo, 2, was robbed of her balance by a very rare neurological disorder
Kate taking her first steps following medical treatment for OMS
But after six months of normality, parents Teresa and Kenny Gulo noticed their little girl had become abnormally wobbly on her feet.
Kate would struggle to walk in a straight line and by October last year was toppling over every time she took a few steps.
At first doctors thought an ear infection or virus might be to blame for her lack of balance, but her condition continued to deteriorate over the next three months.
By January she was falling over up to ten times in five minutes or, if she was out and about, sometimes 100 times a DAY.
Kate also developed shaky hands, fluttery eyelids, problems sleeping and rage attacks which saw her scream and lash out in outbursts “20 times worse than a normal tantrum”.
The following month the problem had become so severe she was unable to crawl, stand or even sit on the floor without falling, and she was admitted to the ER.
The toddler was suffering from Opsoclonus Myoclonus Syndrome
Medics at Lurie Children’s Hospital in Chicago, US, carried out brain scans and diagnosed her with ultra-rare Opsoclonus Myoclonus Syndrome (OMS), which affects the nervous system.
Though it’s not clear what caused it in Kate’s case, after finally pinpointing the condition, doctors were able to start the child on a course of chemo and steroids.
Miraculously, after only a few days’ treatment, Kate-who had been unable to properly walk for almost four months-took her first steps.
Mom Teresa, 30, of Rosemont, Illinois, who had to give up work as a teaching assistant to look after Kate, said: “We cried so much when she got back up on her feet.
“There was a point when we didn’t know how much more downhill her condition could go.
Kate, with her family, underwent a treatment of chemotherapy and steroids
“We started thinking, ‘Will she ever walk again?’ It was devastating to see. Now she is walking and jumping and running, pretty much like a normal two year old.
“It feels like the doctors saved her life and ours too. We don’t know what the future holds but we will keep fighting this with our little ‘SuperKate’.”
Teresa and husband Kenny, 37, a public works labourer, noticed something out of the ordinary with Kate around October, when she started falling over.
The tot was due for her 18 month check-up so they raised their concern but were told by a paediatrician that the bizarre issue could be down to an ear infection.
But by the following week, Kate’s condition had deteriorated even further.
Teresa said: “Before she was just a normal toddler-she might fall a couple of times a day.
“We started to notice that she couldn’t walk in a straight line any more and her gait got a lot wider.
Following the treatment Kate was able to take her first steps without falling
“She would trip and lose her balance and fall completely over. At first it was 20 times a day.”
When Teresa went into hospital in mid-October 2016 to have her second child, baby JJ, now 10 months, Kate also saw a neurologist.
She was diagnosed with cerebellar ataxia-a condition characterized by unsteady gait, often as a result of a virus like Chickenpox-and discharged soon afterwards, but her balance didn’t improve.
“We started keeping her from walking. We would sit her on the couch and give her her iPad because we didn’t want her to get hurt,” Teresa said.
“We didn’t feel we could take her anywhere. If we had to go to the store we had to put her in a stroller or carry her.
“She could hit her face on the corners of tables and was falling 50 to 100 times a day. It was constant. It was devastating not having any answers.”
In February Teresa and Kenny took Kate to the ER after she began struggling to sit by herself and she was finally diagnosed with OMS.
Her doctor said OMS is very rare and affects only one in every million people
Since then she has been undergoing aggressive immunosuppression treatment to prevent her from developing permanent cognitive impairment.
Within days she had begun taking her first steps and Teresa says she is essentially a “normal” toddler, though there is a chance she could relapse.
Kate was also given two doses of chemotherapy and returns to hospital every week for steroid infusions which allow her system chance to ‘reboot’.
She continues to have regular hospital visits and undergo physical, occupational and speech therapy, but Teresa and Kenny envisage a day where she will be treatment-free.
Joanna Blackburn, Neurologist at Lurie Children’s, said: “Kate has been treated with multiple immune therapies.
“Her ataxia (difficulty with balance and coordination) has significantly improved and he abnormal eye movements have stopped.
“At her last visit she was walking well and climbing on chairs and strollers by herself.
“OMS is a very rare disorder. It is quoted to affect at 1:1,000,000.”
To follow Kate’s progress, readers can visit her Facebook page and her GoFundMe page to donate towards her medical expenses.
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