State insurance merger left Ocala children on Medicaid without care

When Heather’s 14-year-old son Isaac, who has severe autoimmune encephalitis, a disease in which his immune system attacks the brain, suddenly stopped receiving his infusions last August, the whole family felt the effects. 

“He just cognitively completely fell apart, like to the point that we felt like we were at ground zero again before they ever diagnosed his illness,” said Heather, whose last name has been withheld for privacy reasons. “All that happened within three months. He went from doing really, really well to cognitively catatonic is the best way to explain it.” 

Isaac, who is also autistic, receives a rituximab infusion every six months that “wipes out his immune system.” IVIg (intravenous immunoglobulin) infusions are then needed to replenish his antibodies. 

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