One moment, Ellie was thriving – excelling academically, competing in gymnastics nationals and collecting gold medals – and the next, everything changed almost overnight. Panic attacks, debilitating headaches, obsessive behaviours, tics and crippling anxiety slowly began taking over the bubbly little girl her family knew so well.
“You go from a child who literally walks on her hands to being bedbound,” says Bianca. “People thought it was hormones or stress at first, but I knew in my gut something was very wrong.”
What followed was months of specialist appointments, scans, blood tests and dead ends. Doctors explored everything from migraines to seizures and psychiatric conditions before Bianca eventually drove Ellie to a specialist in Bloemfontein, desperate for answers.
Within minutes, the diagnosis came: PANS/PANDAS – a rare and often misunderstood autoimmune condition where the immune system attacks the brain, triggering sudden neurological and psychiatric symptoms.
Bianca believes many children may be misdiagnosed because awareness around the condition is still so limited.
“There are so many kids out there who may actually have this,” she says. “It can look like ADHD, OCD, anxiety, eating disorders or psychosis. Unless someone puts all the pieces together, it gets missed.”
For Ellie, daily life has changed dramatically. Once fiercely independent, she now struggles with overstimulation, severe headaches and anxiety that makes school and social situations overwhelming. Some days she needs to lie next to her mom for comfort, while other days glimpses of her old personality shine through.
“She’s still this funny, fiery little girl,” says Bianca. “That’s what makes the hard days so heartbreaking.”
Despite everything, Ellie has remained remarkably brave. In fact, it was Ellie herself who wanted to share her story online to create awareness for other families navigating the same confusing journey.
The family is now facing ongoing medical expenses as Ellie undergoes aggressive treatment aimed at pushing the condition into remission. Alongside the emotional toll, Bianca says the financial pressure has been immense, with specialist visits, hospital stays and treatment costs rapidly adding up.
Still, through the uncertainty, Bianca has found comfort in unexpected places – particularly through connecting with other parents online.
“The strangers have honestly been the people who’ve helped the most,” she says. “And if sharing Ellie’s story helps another family feel less alone, then it’s worth it.”
Now, the family hopes that greater awareness around PANS/PANDAS will lead to earlier diagnoses, better support and more understanding for children like Ellie-Rae – children fighting invisible battles every single day.
What is PANS/PANDAS?
PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) are rare autoimmune conditions that can cause sudden and dramatic changes in a child’s behaviour, mood and neurological function.
The conditions occur when the immune system mistakenly attacks the brain, often after an infection such as strep throat, pneumonia or another illness.
Symptoms can appear almost overnight and may include severe anxiety, OCD behaviours, tics, panic attacks, headaches, mood changes, sensory issues, regression, difficulty concentrating and a sudden decline in school performance.
Because symptoms often overlap with conditions like ADHD, anxiety, OCD or neurological disorders, PANS/PANDAS can be difficult to diagnose and is still not widely understood. Early diagnosis and treatment are considered important in helping manage symptoms and reduce long-term effects.
Details: To contribute to Ellie-Rae’s medical treatment, go to
www.backabuddy.co.za/campaign/ellie-rae-panspandas or scan the QR code.
Follow her journey on IG: @ellie_rae_on_the_rise
Text: Jennifer Campbell
