My niece Emily had her first seizure at 2yrs old. Just before her third birthday, in 2018, she was initially diagnosed with Active Multifocal Epilepsy and she started on Anti Epileptic Medication (AEDs).

Emily’s Epilepsy journey has never been straight forward. In March 2019 she had a status epilepticus – a prolonged seizure. In Emily’s case it lasted 2.5hrs, at which point she stopped breathing, was put in an induced coma and was transferred to Great Ormond Street Intensive care. This traumatised Emily, resulting in her suffering PTSD.

Over the next year her seizures were up and down, various lengths and by the end of 2021 she was suffering many different seizure types, was on three different AEDs and things were getting worse. She was declared as drug resistant and they found on investigation during a sleep deprived EEG that Emily has ESES (Electrical status epilepticus during slow-wave sleep). All the time Emily has been in slow wave sleep her brain had been in constant seizure activity.

Addenbrookes Hospital were consulted for advice and luckily in May 2022 a space became available to commence the Ketogenic Diet Therapy under their care. It was at this point in Emily’s Journey that they found the amazing Daisy Garland Charity. The most generous and heart-felt welcome box of goodies landed on her door step and her next journey began.

The Daisy Garland is a charity working exclusively for children and families whose lives have been touched by drug-resistant epilepsy. Set up in 2004 in memory of their daughter, Daisy, The Daisy Garland provides positive support for some of the 18,000 children in the UK who suffer from drug-resistant epilepsy. They are mindful of the complex needs of families whose children have epilepsy - have first-hand experience and always are there to help. The help they offer is life-changing and wide ranging.

Their vital support includes:

  • transforming lives
  • breaking down loneliness and isolation
  • helping reduce the risk of SUDEP (sudden unexpected death in epilepsy)
  • increasing epilepsy and ketogenic awareness
  • empowering parents and carers
  • improving mental health
  • bringing hope to despairing families

Here is the link to their latest charity film: The Daisy Garland - 'A journey of hope...'

Stephanie Burnett