Tragic tot's death after rare epilepsy syndrome diagnosis remembered by family a decade on

Daily Record

4 days ago

"I could not believe she would not wake up - we still tried to look for a positive. You do not believe the worst will happen until it does."
A Scots mum has relived the devastating moment she was told by medics there was nothing more they could do for her tot daughter.
Cheryl and Thomas Murphy's eldest daughter Edie was just two years and eight months old when she died from a rare epilepsy syndrome, just months her first seizure.
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The Kirkcaldy couple, who now live in Pudsey, struggled for 16 months to have a baby before discovering Cheryl had polycystic ovary syndrome, and little Edie was conceived via assisted conception.
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But tragedy hit the trio and on October 9, 2015, the family's lives changed forever. They had finished preparing for a move from Fife to Leeds the following week when Edie was rushed to hospital never to come home.
As the now the 40-year-old prepares to mark the ten year anniversary of Edie's death with a charity run, mum-of-three Cheryl told Yorkshire Live:"Everything was fine. We had a great day out and returned to the house.
"Edie was put to bed and was making us laugh as she requested ice cream for breakfast since we were moving and everything was packed away.
"I left the room and was watching her on the baby monitor. She was using her dummy as a stick to rattle against the crib sides when it stopped.
"Thomas went up to check on her and he suddenly called me up. It was then when I knew something was wrong."
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Cheryl called up to ask if Edie was having another seizure - but this time, it didn't stop. "We called the ambulance and crews came immediately.
"When we arrived at the hospital, Edie was taken into a room where a team of doctors were waiting. I wasn't allowed in, so we sat there.
"After a while, we were took into a room and told that they had stopped the seizure but to do so, they had to put her on life support."
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The next day, Edie was transferred to Edinburgh's Royal Hospital for Children and Young People. Cheryl explained: "The doctors told us that Edie was like a puzzle; as they were trying to stop more seizures, something else in her body was going wrong. I said that's just Edie, she never makes life easy.
"I could not believe she would not wake up - we still tried to look for a positive. You do not believe the worst will happen until it does."
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On October 12, 2015 Edie had an MRI scan followed by a surgical procedure for a probe which doctors hoped would help to target and destroy brain tissue responsible for seizures.
Cheryl was alone with Edie as Thomas had gone with the removal men to move into the new house when doctors gave her the harrowing news that would change their lives forever.
She said: "I began calling the room we kept entering 'the room of doom' as it was only bad news given in there. They gave me a lot information about the MRI but it didn't really go in.
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"It was only when I asked 'she will be ok. won't she', but to that they said 'no'. They were brutally honest and told me that they were worried that they could not get her stable and it was best if Tom came back to the hospital."
Two days later doctors diagnosed Edie with hemiconvulsion-hemiplegia-epilepsy (HHE) syndrome - a rare epilepsy syndrome in children aged under four which can develop after seizures during a febrile illness.
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Cheryl said: "On Thursday Edie had another MRI scan and we were then told that her condition had worsened and there was nothing that they could do.
"We had our family visit the hospital as we prepared to say goodbye."
The family stayed with friends and family as they remained in Scotland to say their final goodbyes to Edie. Cheryl said: "We were also grateful to the hospital for everything they did and the charity who helped us to stay near Edie.
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A decade on, the family still celebrate little Edie's birthday. "If you ask the girls about Edie, they would talk for hours about her despite Annie being too young to remember her and Eilidh not meeting her at all," said Cheryl.
"We felt this was really important and we like to celebrate her birthday as it was a good thing. Every year the girls pick what to do for it.
"We also do something and spend time as a family like a walk on the anniversary of her death. The girls also like taking part in marathons in honour of Edie.
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"There were other things that also kept Edie's memory alive such as friends nominating her name to be on a TUI plane which a part of a competition launched after she had died.
"It was amazing that her name was chosen. To this day we still get messages from those who have been on it."
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Now, Cheryl is preparing to take part in Epilepsy Action's Bradford 10k on Sunday June 1 in memory of her little girl.
"We normally run and raise money for the hospital that helped Edie, however, this year, since it is the 10th anniversary of her passing - we wanted to do something for Epilepsy Action.
"There a group of us called 'Edie's Flyers' doing Bradford 10k this year - some people in the group have never done a marathon before so it is nice to make a new memory for us all.
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"I would like to thank everyone who has helped us raise money over the years and continue to do." You can sponsor Edie's Flyers here.
Louise McCormick, Bradford 10K Race Director, said: ' Stories like Edie's are such a big part of what makes Epilepsy Action's Bradford 10K so memorable. So many people are running for someone; friends, family members, someone they've lost, or for themselves – it's a reminder of how epilepsy really affects everyone involved.
'Money raised by the event will go directly to Epilepsy Action, helping to support people with epilepsy across the UK. The funds ensure vital resources are available including our talk & support groups, award-winning helpline, and one-to-one befriending service.
'Whether running for a PB, or it's your first 10K, everyone is welcome to run.'