by Tim O'Grady | Oct 2, 2018 | Updates
The first day of September wasn’t great for Tobes, being a Saturday he was indulging in some washing machine watching, a favourite pastime, when he suddenly went into two minute seizure. Kim was all over him making sure he was breathing and wasn’t turning blue by...
by Tim O'Grady | Sep 2, 2018 | Updates
The start of August was terrible for Toby seizure wise, he was having one, two or even three fully convulsive seizures a day which creates a downward spiral as he gets over tired and can’t cope the next day so the cycle continues. He was at the play scheme at school...
by Tim O'Grady | Aug 8, 2018 | Updates
I’ve really struggled writing this update, it’s been hard to find the right words to describe where we are now as life has once again changed. In the early years everything was about medical emergencies and dealing with highly stressful life and death situations...
by Tim O'Grady | Jul 1, 2018 | Updates
This is going to be a short update as we want to focus on really saying ‘thank you’ to some incredible people, here’s why: On Friday we returned from 3 days away in Italy, we’d had a lovely city break in Bologna eating lots of good food, drinking the local wine and...
by Tim O'Grady | Jun 6, 2018 | Updates
After a pretty good month in March, the last 8 weeks couldn’t have been more different. The reality of Dravet struck again with another change to Toby’s seizure pattern. Not only have they increased but he is now having half of his seizures when he is asleep either...
