SUDEP Action

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Purple hearts for SMPs & Glasgow Uni to be lit purple!

 

Jessica Johnston died suddenly and unexpectedly from epilepsy in January 2022, just 20 years old. Jessica’s epilepsy was never diagnosed so she never received the care and treatments that may have kept her alive.

For Purple Day 2024, Jessica’s mother Lindsey Greer wants to raise awareness of epilepsy and ultimately reduce the risks of premature death. Lindsey, 49 and Jessica’s 19-year-old brother Graeme both have epilepsy.

With the support of epilepsy charity SUDEP Action, Lindsey has arranged for crochet purple hearts to be sent to every member of the Scottish Parliament for them to wear on Purple Day, Tuesday March 26th. Lindsey’s own MSP Monica Lennon will distribute the hearts to colleagues from all political parties. Along with the heart, each MSP will receive a card with a picture of Jessica and a message which reads:

Thank you for wearing a SUDEP Action heart for epilepsy’s Purple Day. This heart is made for you by Libby, a friend to Jess who died suddenly from epilepsy whilst waiting for treatment for her seizures. It shows the warm heart of our community and work to save many young lives cut short by epilepsy every year in Scotland since 2002.

Jessica’s father Duncan Johnston has arranged for the main building at Glasgow University to be lit up purple on March 26th from 6pm in the evening until daylight the following morning. And the Townhouse in Hamilton will be lit up Purple too. 

Last year, SUDEP Action sent purple crochet hearts to every MP in Westminster to wear on Purple Day and it has been Lindsey’s wish to do the same in Scotland. Libby Hague, Jessica’s school friend, crochets and was asked 11 months ago if she could make 129 purple hearts for all MSPs. Libby was delighted to assist in honour of her very missed and valued friend.

Jessica’s epilepsy was never diagnosed yet she suffered from seizures for over five years. Jessica also had longstanding complex gastrointestinal difficulties. Jessica spent long periods of time in hospital where she was required to be enterally fed, yet despite her complex health difficulties her poor health did not define her. Jessica was a vibrant, positive, kind, and empathic young lady with a proactive approach to supporting others with invisible illness. Jessica hated injustice.

Lindsey said: “Many people assume Jessica died because of her tummy problems, she did not. Jessica died from epilepsy that was only diagnosed after her death. Jessica’s epilepsy was not treated so the risks were high.”

Lindsey is determined to raise awareness about the risks of epilepsy on Purple Day – an international awareness day for epilepsy.

She added: “As Jessica’s mum, I don’t know where I would be in terms of asking the right questions and understanding complex reports without the ongoing support received from SUDEP Action. Jessica was a supporter of SUDEP Action because of my complex epilepsy. In 2018, she asked everybody she knew – and everyone who knew me – to wear purple on Purple Day. She would say, ‘we fight epilepsy as a family’. Jessica was undiagnosed but she knew the risks. I will carry on because there are other Jessicas out there, undiagnosed, awaiting treatment and at risk. I cannot abide the thought of any other family suffering the way we have and I will not let Jessica’s story be brushed aside. Her legacy is of positivity in adversity and I will continue to honour my daughter by increasing the awareness of epilepsy thus reducing risk and ultimately saving lives.”

Monica Lennon MSP said: "Purple Day is a wonderful opportunity to increase public awareness of epilepsy - a common serious neurological condition that affects 58,000 Scots. It is also a time to remember those lost and shine a light on the incredible work of charities such as SUDEP Action. Through supporting Jess’s family, I appreciate how much SUDEP Action does to help families affected by epilepsy-related deaths. More action is needed to save lives. Knowing how much Purple Day meant to Jessica, Libby has worked tirelessly to make sure her memory lives on."

 

Find out more about Purple Day here