One in One Million – Opsoclonus Myoclonus Syndrome

In fall of 2016, Teresa and Kenny Gulo noticed that their daughter Kate, 2, who loves to dance and run, was losing her balance more often. “Kate’s falling was more than your average toddler losing their footing. She seemed off balance and wasn’t able to walk properly,” says Teresa. By mid-October, Kate’s symptoms had worsened. Just two days after her baby brother JJ was born, her mom and dad were taking Kate to their local hospital. Kate underwent an MRI, a spinal tap and many lab tests. Doctors diagnosed her with acute cerebellar ataxia, a childhood condition characterized by an unsteady gait, most likely a secondary response to an infection.

“We were told that her symptoms would resolve on their own but that’s not what happened. By February, Kate’s condition worsened to the point that she was not able to sit, stand or walk on her own,” says Teresa. “It was at that point we turned to Lurie Children’s for answers.”

On February 5, 2017, Kate became one in a million. She was diagnosed with Opsoclonus Myoclonus Syndrome (OMS), a very rare neurological disorder.

Kate was losing her ability to stand, walk and talk.

“We still don’t know (and may never know) why Kate got OMS. In 50% of OMS patients, the syndrome is the result of the body creating antibodies to fight a cancerous tumor called neuroblastoma, however, some of the antibodies get confused and attack the brain. The resulting neurological symptoms include ataxia, chaotic eye movement, involuntary tremors, and fits of rage. In the other 50% of cases the reason the antibodies are attacking the brain is still unknown. It is possible that it is an autoimmune response to a virus,” says Kenny.

Since February, Kate has been undergoing aggressive immunosuppression treatment at Lurie Children’s under the care of specialist in Neurology and Rheumatology.  “Early diagnosis and initiation of immune therapy offers the best outcome for children with OMS. The most concerning potential long term consequence of OMS is the development of permanent cognitive impairment. Our goal with treating Kate with combination immune therapy including weekly infusions is prevent her from developing permanent cognitive impairment,” says ,” says Joanna Blackburn, MD, Kate’s neurologist.

In addition, Kate went through two rounds of chemotherapy. Each week she visits Lurie Children’s for steroid infusions to help stop the attack of the disease on her brain and give her immune system a chance to reboot itself. She also spends hours in physical and occupational therapy. “Because this disease is so rare there is a lot that is unknown. She’s responded well to the steroid infusions and therapy but we don’t know yet if her actual immune system has healed or it’s just the steroid treatment keeping her OMS at bay,” says Kenny. Kids with OMS may have it once, some kids have OMS recurrences for years, and other kids struggle with OMS for a lifetime. There is also a small possibility that Kate could develop neuroblastoma, a type of cancer.

“We don’t know what the future holds for Kate, but we do know that she is a strong, stubborn, and a determined little girl.  We are so grateful for Lurie Children’s. It was hard seeing Kate learn to walk again, but we believe that Lurie Children’s quick and accurate diagnosis and treatment gave her the ability to get back to walking,” says Teresa. “Brain damage occurs when her condition goes untreated for a prolonged period of time. Sometimes that brain damage causes permanent speech, cognitive and physical delays. We believe Lurie Children’s saved her from that.”

To keep up with Kate’s journey, visit her Facebook page, Strong Like Kate.

Since beginning treatment and physical therapy in February, Kate has made significant progress regaining her ability to stand, walk, talk and run!

Learn more about Opsoclonus Myoclonus Syndrome (OMS).