Purple lights the way in memory of Jessica
To find out more about SUDEP Action go to www.sudep.org or call the charity’s support line on 01235 772
852
Heartbroken family and friends of a young woman gathered at Hamilton Town House on Purple Day this week to help raise awareness of epilepsy.
Jessica Johnston, 20, died suddenly and unexpectedly from epilepsy in January 2022. Her epilepsy was never diagnosed so she never received the care and treatments that may have kept her alive.
And now, Jessica’s mother, Lindsey Greer, wants to raise awareness of epilepsy and see action taken to reduce the risk of premature death.
Lindsey said: “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 honour my daughter by increasing the awareness of epilepsy, thus reducing risk and ultimately saving lives.”
To coincide with Purple Day (Tuesday, March 26), an internationallyrecognised action day on epilepsy, Lindsey attended Hamilton Town House with Central Scotland MSP Monica Lennon on Monday night.
Lindsey, 49, and Jessica’s 19-year-old brother Graeme both have epilepsy.
Jessica’s epilepsy was never diagnosed yet she suffered from seizures for over five years. She also had longstanding complex gastrointestinal difficulties and 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.
The 20-year-old was a vibrant, positive, kind, and empathic young lady with a proactive approach to supporting others with invisible illness.
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.”
Now, 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.
With the support of epilepsy charity SUDEP Action, Lindsey arranged for crochet purple hearts to be sent to every member of the Scottish Parliament for them to wear on Purple Day.
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 dearly missed friend.
Along with the heart, each MSP received a card with a picture of Jessica and a message which read: ‘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 also arranged for the main building at Glasgow University to be lit up purple today this week.
Ms Lennon will distribute the purple hearts to colleagues from all political parties. The MSP said: “Jessica Johnston from Hamilton was only 20 years old when she passed away in January 2022. She was a much-loved daughter, sister and friend and it’s fitting that her hometown is marking Purple Day.
“This 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 the SUDEP
“Through supporting Jess’s family, I appreciate how much SUDEP does to help families affected by epilepsyrelated deaths.
“I am grateful to Hamilton Town House for lighting up in honour of Purple Day and to Jessica’s friends and family for attending to raise awareness in her name.”
I cannot abide the thought of another family suffering like we did when we lost Jessica