When she was four months old, a doctor suspected, correctly, that she has a genetic disorder that causes tumour growth.
Tuberous sclerosis complex patient Ellie Hui. Every two to three years, Ellie needs to undergo a series of scans to check that she does not have tumours that would endanger her.
Tumours in the brain can cause epileptic fits and significant cognitive impairment. Half of the patients with TSC are autistic or have learning disorders. One in four has an IQ of below 50 . Ellie also had a large lesion on a neck vertebra that they feared might be bone cancer given its size, but a biopsy proved that it was benign.
At just over the age of one, Ellie started getting absent seizures two to three times a day. She could be running around when she would suddenly stop, her eyes blank like she was in a trance, and her body would bob up and down slightly. “But we shared her condition with the teachers there, the signs to look out for, and should there be an emergency, I told them to call the ambulance before calling me,” she said. Fortunately, this course of action has not been needed.
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