Family remember 'beautiful' Cheddar teen who 'touched the lives' of many
PUBLISHED: 12:00 17 October 2017
The mother of a 'beautiful, kind and caring' teenager has made it her mission to warn people about the disorder which led to her daughter's death.
Tanya Russell hopes to raise awareness about the risks of epilepsy after her 17-year-old daughter Johdi died earlier this month.
Johdi died from a Sudden Unexpected Death In Epilepsy (SUDEP) episode on October 5 at her home in Cheddar.
Tanya told the Mercury: “Johdi had a seizure that morning so we settled her back into bed to let her rest.
“I went upstairs to check on her at 10.30am and then again at about 12.25pm and she was leaning over the side of the bed. She wasn’t moving or breathing.”
One in 10,000 people die of SUDEP a year which often happens during or following a seizure for no obvious reason.
Tanya said her daughter as an ‘eco-warrior’ who had ‘touched the lives’ of everyone she met.
She said: “After it had happened I just knew it was SUDEP. We had only heard a little bit about it before she died.
“Johdi’s epilepsy nurse told us she didn’t suffer which helps.”
Johdi was diagnosed with epilepsy in August 2016 following a string of bad seizures but Tanya said that never held her back.
She said: “She was a beautiful, kind and caring girl who was against animal testing and was all for gay rights. She just wanted to make people happy.”
The family decided to donate Johdi’s brain and part of her heart to medical research in the hopes of finding a cure for SUDEP.
Tanya said: “Johdi is actually a prime candidate for the research as she had night seizures.
“She died of SUDEP so hopefully they will be able to work out how it happened and prevent anyone else from suffering this way.”
The family has received overwhelming support from the community and Tanya had help from the Facebook page Parents Of Children With Epilepsy.
She said: “They have been a godsend to me this year. We didn’t know much about SUDEP but hopefully with the research and by raising awareness we can make people aware of what can happen.”
Tanya and her family has supported a petition to make seizure alarms, which are worth more than £1,000, on the NHS.
To sign the petition, click here.