Fundraiser for Harper Hissong's OMAS Battle

To our friends, family, brief encounters and strangers impacted by Harper's story.

Our precious daughter is fighting a battle. In the days preceding the month of August 2023 Harper started to experience cognitive and behavioral changes. She was sleeping more often and having small tremors throughout her body. When these tremors got severe, we took her to her local pediatrician where she passed a low-sugar test.

On August 4th, Harper was unable to walk on her own and the tremors lasted longer, and with greater severity. 6 hours later we found ourselves at Colorado Children’s Hospital in Aurora where we were admitted for 3 days while numerous labs and imaging tests were conducted.

Harper was initially diagnosed with acute cerebellar ataxia. Acute cerebellar ataxia, or cerebellitis, is a disorder of the nervous system. It is the sudden onset of a disturbance in coordination. The cerebellum is the part of the brain that plays an important role in balance and coordination. It does not function properly in the case of cerebellar ataxia. This condition normally goes away by itself in 3-6 weeks.

Unfortunately, after being discharged her symptoms got worse. On August 14th Harper no longer had the function, or desire, to walk. She was having night terrors and her eyes could not focus. Under the direction of our neurologist at CCH we rushed back down to Aurora.

After further labs and testing, Harper was diagnosed with Opsoclonus Myoclonus Ataxia Syndrome, or “Dancing Eye Syndrome”. This super rare disease affects 1 in 10 million individuals a year. In young children, it is most often caused by a tumor that triggers the immune system to mistakenly attack the nervous system, with an onset that can be described as abrupt and severe.

Harper has an AMAZING team of 15 neurologists, 7 pediatric medical doctors, 2 highly specialized pediatric immunopathologists and MANY talented RNS and CNAS. In particular, she has a therapy dog (Kalli) who checks in on her periodically (see below).

Although the mortality rate is low, Harper has a battle ahead of her. OMAS is not curable, however, specific drugs have proven themselves to suppress the symptoms. She will need infusions and aggressive steroid treatment for 3 consecutive days, every month in Colorado, for at least 2 years. Following successful treatment, we will work with developmental and occupational therapists to reach her milestones as she grows.

We are blessed that our neurology team caught this early, and we can start treatment now. We are also overwhelmed with the love and support we have already received. Contributions will help us with food, lodging, transportation, and medical expenses as we fight this disease. We are also saving to get a reliable vehicle that has 4-wheel drive The future is somewhat cloudy as there is a chance of relapse and there is still SO MUCH that is not known about OMAS. We foresee a long road, but we are immensely thankful that we do not have to travel this road by ourselves!

Psalm 41:3 “The LORD will strengthen him upon the bed of languishing: Thou wilt make all his bed in his sickness”.

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God Bless