Johdi was a much-loved daughter, sister and friend who sadly lost her life to SUDEP, aged just 17 in 2017. Her mother, Tanya, hopes that, through research, fewer families will have to endure the pain of losing a loved one to epilepsy in the future.

“Johdi experienced her first febrile seizure at just 4 months old, however, it was not until her first tonic-clonic seizure aged 16 that she was diagnosed with juvenile myoclonic epilepsy. Johdi had bad days every now and then, but to the rest of the world she was just happy-go-lucky Johdi, always smiling. She got a place at college to do level 3 childcare, and dreamed of getting a job working to help children with autism. She made so many friends at college in the short time she was there and started to seem her old self again. She was doing something she loved and it was wonderful to see.”

Tragically, Johdi passed away in her sleep the day after Tanya’s birthday.

“We’d had a wonderful day all together. Johdi had been singing and making us all laugh, she seemed so happy and full of life. My whole world fell apart right there. Despite multiple family members having epilepsy, we never knew about SUDEP or that Johdi was at risk. After her funeral, I knew I had to do something to raise the awareness needed for SUDEP and epilepsy, so I organised the Purple Ball.”

Tanya’s Purple Ball has since become a hugely popular annual fundraising event in aid of Epilepsy Research UK and SUDEP Action. Alongside the Purple Ball, Tanya continues her dedicated fundraising along with her family.

“I don’t want Johdi’s death to become just a statistic. It’s important to us that Johdi’s legacy be that other families never have to face losing someone to epilepsy.”

Tanya Russell, November 2021

To make a donation to Johdi’s memorial fund, please use the link below.

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