Mum 'scared every day' for daughter with epilepsy

Shona Crowther wishes there was a dedicated local charity for epilepsy suffers

A mother has called for more peer support for epilepsy sufferers and increased awareness of the condition.

Shona Crowther, from Guernsey, said her 12-year old daughter Tehya had epilepsy and doctors dealing with her condition had been "absolutely phenomenal".

But when it came to daily support she said she had "no clue where to turn" and wished there was a dedicated epilepsy charity or support group on the island.

The BBC has approached the Committee for Health and Social Care for comment but they are yet to respond.

Tehya had her first seizure at two years old

Tehya has suffered seizures since she was two years old and was diagnosed with epilepsy in 2023. She started medication and was free of seizures for two years.

But as doctors started to phase Tehya off medication, the 12-year-old had a seizure which put her in hospital on a ventilator, sedated for 16 hours.

Ms Crowther said there was a lack of local peer support for epilepsy sufferers and their families dealing with the anxiety of seizures.

"I'm scared every day because you don't know when her next seizure is going to be...we've been sat at the park, having an ice cream and she's just gone down."

'A community'

There is no dedicated charity for the condition in Guernsey but the family has been given a seizure pillow for Tehya to sleep with by the national charity Hope.

Ms Crowther said her daughter felt like people were judging her because of her seizures: "She doesn't like to really talk about it and open up because it does make her very anxious."

She said she would love to work with a local charity to raise funds and "to share stories and just as a community, come together".

Tehya said she also wanted to spread a message to others with the condition: "I understand how they feel and it's really scary and they can open up to people to talk about it."

Her mother added: "I still don't know a lot about epilepsy, every time Tehya gets submitted to hospital I feel I learn something new."

"People need to be a little bit more educated and aware of of epilepsy," she said.