by Tim O'Grady | Oct 20, 2016 | Toby's Story
Our beautiful baby boy was born on the 22nd November 2013. It was a fairly rocky but ‘normal’ start with an emergency caesarean followed by a scare in week 2 when he lost too much weight and ended up in hospital under a UV lamp to treat jaundice. The next 8 weeks were...
by Tim O'Grady | Oct 12, 2016 | reviews
A good friend of ours found the Embrace watch on the crowdfunding website Indiegogo not long after Toby started to have seizures, it seemed like the miracle device we were searching for to help keep Toby safe and to alert us or carers when he had a seizure. We...
by Tim O'Grady | Oct 6, 2016 | Updates
Sorry for the late update, the end of the month came and went in a flash, and what a month it has been. The biggest thing this month is that Toby has started school!! Ok, it’s’ a nursery class but it’s in a proper school with big kids, buses and a...
by Tim O'Grady | Sep 2, 2016 | Updates
Regular readers will know that over the last few months Toby’s ‘partial’ seizures have progressively been getting worse, increasing in length and duration till the point he’s having a seizure every minute or so during bad times. Last month we spoke to the neurologist...
by Tim O'Grady | Jul 31, 2016 | Updates
I hate starting these updates with ‘it’s been a tough month’ as it feels very repetitive but I guess that’s the nature of a condition like Dravet, it changes all the time and very rarely for the better. During one antenatal class I remember a...
