Dravet Syndrome is one of the most catastrophic epilepsies and is a rare neurological condition causing severe, difficult to control seizures alongside developmental delay.
Braxton's Story for Piper's Song by Dravet Syndrome Foundation published 5 days ago
A family's story of their journey with Dravet syndrome created by the Ried family for the Dravet Syndrome Foundation.
Melorah by JenniferMcM published 10 days ago
Melorah is our second child. She was greatly anticipated as there is almost five years between her and Amelia, our oldest. We hit a few bumps with Melorah during her first year. First, there was a dairy allergy. Then there was a febrile seizure at 5 months, with subsequent seizures following. Melorah had an EEG and a visit with her first neurologist. We were told not to worry, she would grow ou...
Aimee’s Story by Anon published 18 days ago
Aimee, was born in September 2005 and for the first few months of her life appeared completely normal, however, this all changed just before she was 4 months old when she had the first of what would be many, many seizures.
This particular seizure lasted 45 minutes and resulted in her being intubated and retrieved by Guys and St Thomas’s paediatric paramedics. We were blue-ligh...
HARLEY - Living with Dravet Syndrome by Dawn published 18 days ago
Harley was born on 21st June 2005. Unlike his sister Hannah who was 7 weeks premature Harley was full term and apart from having a venous delivery and needing physio for a few weeks due to his foot being bent backward in the womb everything else was fine for the first few months.
All this changed in November 2005 on our first family holiday abroad to France. Harley had received his vaccin...