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Most mornings Philippa Ward’s 13-year-old son, Thomas, has a seizure after waking up.

“That determines how his day will be,” she says.

Thomas’ whole body is stiff and he appears to spasm during the seizure.

“Then he will relax a bit,” Philippa, from Wigginton, says.

Some seizures last a minute; more serious ones are longer and require urgent hospital treatment.

Philippa and Thomas Ward Philippa and Thomas Ward (Image: Supplied)Thomas was diagnosed with Tuberous Sclerosis Complex (TSC) when he was five-months-old.

The incurable condition causes non-cancerous tumours to develop on his brain. There are now too many tumours to count. These tumours have led to him having epilepsy and learning difficulties.

Every aspect of Thomas’s life is impacted by TSC.

He is unable to speak and experiences delayed motor skills, meaning he often uses a wheelchair to get around. He requires constant medical scans and monitoring to check tumor growth.

TSC is caused by mutations in genes and is hereditary, meaning a parent can unknowingly carry the faulty gene and pass it on to their child.

 

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