Team Rory

Eight-year-old Rory first presented with loss of balance and ataxia at 2.5 years old, and for the next few years, she developed a series of seemingly unrelated symptoms that worried her parents and puzzled doctors. Then, when she was 6 years old —at a time when other children her age were wrapping up first grade and looking forward to summer vacation— her symptoms intensified to crisis levels. For a period of six weeks, she exhibited decreased consciousness, lost the ability to walk, was unable to speak coherently, and stopped eating and sleeping. She experienced hemispatial neglect (which meant one side of her brain was not working correctly), autonomic dysfunction, hallucinations and finally — and perhaps thankfully — a complete loss of memory of this frightening time. Local doctors were at a loss to explain Rory’s symptoms, so her parents began an exhaustive search for medical answers. Over the next two years, Rory missed nearly 10 months of school before being seen by a team of doctors at Duke Children’s Hospital, who diagnosed Rory with Autoimmune Encephalitis (AE).
AE is a serious medical condition where the immune system attacks the brain, resulting in impaired brain function. AE can produce a wide range of neurological and psychiatric symptoms and can be life threatening if not diagnosed and treated appropriately with first-line therapies like steroids, IVIG and plasmapheresis and sometimes second-line therapies including Cellcept, an immunosuppressive drug, Cytoxan, a chemotherapy drug, and Rituximab, a cell-targeted antibody injection. When treated, more than 80 percent of patients with autoimmune encephalitis eventually have partial or complete recovery. However, on average, autoimmune encephalitis patients can take more than a year of treatment to recover, and relapses can happen. Because Duke is one of the few pediatric centers treating this disease the family must travel from their home in Indiana to North Carolina on a regular basis, incurring travel expenses on top of mounting medical costs.
The past six years have been extremely difficult for the Halberts as they have struggled to identify this mystery disease and find appropriate medical care for their daughter. Now the family faces a long battle against AE. People have asked us what they can do to help, and that’s why we’ve set up this page. Please join Rory’s team. Lend support during her recovery by donating here and sharing her story on social media to to raise awareness for AE.
With great thanks, Kathy O’Leary and Amy Claus