Kate's 1 in a Million Fight OMS
Donation protected
If you know Kate, you know that she has a great smile and an infectious laugh. She loves to dance and run, but more than anything, she loves her little brother, JJ – she especially loves giving him kisses and “ugs”. Kate is an adorable “one in a million” little girl. On February 5th, 2017 she became another “one in a million” when she was admitted to Lurie Children’s Hospital in Chicago and diagnosed on February 6th, with Opsoclonus Myoclonus Syndrome (OMS) – a very rare neurological disorder.
Back up to October: Kate began falling down more than your average toddler – she seemed off balance and wasn’t able to walk properly. By mid October her symptoms had worsened. Two days after her baby brother was born Kate was admitted to the hospital for testing. After MRIs, a spinal tap, and many lab tests, it was presumed that Kate had acute cerebellar ataxia. Her balance problems were thought to be the response to an infection and her symptoms were expected to resolve on their own. Unfortunately, after several months and many more tests, her symptoms did not improve. At the beginning of February her conditioned worsened to the point that she was not able to sit, stand, or walk on her own. Apprehensively (is that the right word?) Kenny and Teresa took her to Lurie’s, at which point she was diagnosed with OMS.
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.
Kate is currently undergoing an aggressive immunosuppression regime to try to stop the attack on her brain, and give her immune system a chance to reboot itself. Because this disease is so rare there is a lot that is unknown. 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.
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. For those of you who have asked what you can do to help, THANK YOU. Your prayers, thoughts, good vibes, meals, cards, calls, and texts have been so appreciated. If you feel so inclined to make a donation, your support will help cover the cost of medical expenses, travel back and forth for treatments, as well as lost income while away from work.
Thank you again for your concern for Kate and the Gulo family . If you’re interested in learning more about opsoclonus myoclonus, here are a couple good resources:
http://www.omslifefoundation.org
https://rarediseases.org/rare-diseases/opsoclonus-myoclonus-syndrome/
https://www.aao.org/pediatric-center-detail/neuro-ophthalmology-opsoclonus-myoclonus-syndrome
Back up to October: Kate began falling down more than your average toddler – she seemed off balance and wasn’t able to walk properly. By mid October her symptoms had worsened. Two days after her baby brother was born Kate was admitted to the hospital for testing. After MRIs, a spinal tap, and many lab tests, it was presumed that Kate had acute cerebellar ataxia. Her balance problems were thought to be the response to an infection and her symptoms were expected to resolve on their own. Unfortunately, after several months and many more tests, her symptoms did not improve. At the beginning of February her conditioned worsened to the point that she was not able to sit, stand, or walk on her own. Apprehensively (is that the right word?) Kenny and Teresa took her to Lurie’s, at which point she was diagnosed with OMS.
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.
Kate is currently undergoing an aggressive immunosuppression regime to try to stop the attack on her brain, and give her immune system a chance to reboot itself. Because this disease is so rare there is a lot that is unknown. 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.
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. For those of you who have asked what you can do to help, THANK YOU. Your prayers, thoughts, good vibes, meals, cards, calls, and texts have been so appreciated. If you feel so inclined to make a donation, your support will help cover the cost of medical expenses, travel back and forth for treatments, as well as lost income while away from work.
Thank you again for your concern for Kate and the Gulo family . If you’re interested in learning more about opsoclonus myoclonus, here are a couple good resources:
http://www.omslifefoundation.org
https://rarediseases.org/rare-diseases/opsoclonus-myoclonus-syndrome/
https://www.aao.org/pediatric-center-detail/neuro-ophthalmology-opsoclonus-myoclonus-syndrome
Organizer and beneficiary
Samantha Rossi
Organizer
Des Plaines, IL
Kenny Gulo
Beneficiary