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Siobhon Parry

The Thurstons

Siobhon, mother to brave 22-month-old Arla who lives with Dravet Syndrom, uses our App to track seizures and appointments.

Siobhon shares the turbulent times before her daughter's diagnosis

We were shocked when Arla was diagnosed with Dravet Syndrome, after experiencing unexplained seizures for a year. She had her first seizure in 2015 at four and a half months old, lasting 20 minutes. I panicked. I couldn't even speak to the 999 operator, I was crying and shaking so much. My husband was calm; he spoke to the operator, held my hand and kept speaking to our ickle girl telling her she was going to be fine. This whole time she was constantly shaking. We couldn't believe this happened to her and we were told it was just a one-off seizure. She was kept in hospital overnight, closely monitored.

When Arla was seven months old she experienced her second seizure - the worst day of my life. At this point I was still on maternity leave, alone this time. I rang 999 immediately and was a lot more focused. My girl needed me.

Arla’s seizure lasted 55 minutes and, when we reached the hospital, she was rushed into resus at The Royal Alex Children's Hospital in Brighton. I counted 18 people in the room ranging from nurses, doctors and anesthetists’ at one point helping her. She had to be intubated to stop the seizure. The staff at the RACH are incredible, kind, supportive and caring.

Arla's seizures continue to develop, with over 22 seizures recorded in 2016 and 27 seizures in 2017 so far. They have been shorter but are still petrifying. I want to remain positive about her condition and support our daughter. I use the Young Epilepsy App to track seizures and appointments. I definitely feel, as Arla gets older, she will want to be able to talk to children with this condition and this charity will be a massive support system.

 

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Cyber EssentialsFundraising RegulatorYoung Epilepsy is the operating name of The National Centre for Young People with Epilepsy (NCYPE).
Registered Charity number 311877 (England and Wales)

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