Eleanor's Story
From the day she was born, Eleanor has been a fighter. Her journey is one of hope, resilience and pure determination.
Through every early obstacle, Eleanor’s strength carried her toward a hemispherectomy that would change her life.
The Cause
Eleanor suffered a prenatal stroke and brain bleed at 31 weeks.
She and her surviving twin sister (Ava) were born prematurely due to Twin-to-Twin Transfusion Syndrome (TTTS).
In her first months of life, Eleanor was diagnosed with cerebral palsy, hydrocephalus, cortical vision impairment, and later, infantile spasms along with focal and absence seizures.
Intervention
By six months old, she had already endured three major surgeries.
In her first four months, Eleanor underwent manual brain taps to manage her hydrocephalus until she was stable enough for a Rickham’s Reservoir. At eight weeks, she received a ventricular shunt, which had to be revised three months later due ongoing blockages.
Action
By age two, she was diagnosed with refractory epilepsy.
Despite every treatment tried, Eleanor’s seizures continued, leaving her family facing the difficult reality of refractory epilepsy. After trialling multiple medications with little success, they were offered a new path: hemispherectomy surgery.
Hope
Eleanor was almost four when she had her hemispherectomy.
At 3 years and 10 months old, Eleanor bravely underwent a functional hemispherectomy — a decision that carried both fear and hope in equal measure. The change in her was undeniable.
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