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...
by Tim O'Grady | May 17, 2018 | Toby's Story
Helen House, our journey. Toby was around nine months old when we were referred to Helen House, he was having weekly seizures lasting over an hour, we were having almost daily ambulances to our house and ending up in hospital weekly for days at a time. It was...
by Tim O'Grady | May 1, 2018 | Updates
It’s been a tough month for all of us, Toby’s seizure pattern has changed and he’s started having seizures in his sleep. The first seizure happened just before 5am on a Saturday morning, we had the monitors on as usual and woke to the horrible noise Toby makes when he...
by Tim O'Grady | Apr 4, 2018 | Updates
March started in a scary way for us, not the usual seizures but the ‘Beast from the East’ which made a trip to Helen House and beyond a little stressful. Getting to Oxford was ok, just, and we checked Toby in and headed off as quick as possible for the short 30miles...
by Tim O'Grady | Mar 4, 2018 | Updates
February had lots of positives but when the negatives came they caught us off guard and really shook us both up. Lots of smiles and laughter Toby has been on good form, he’s still eating bits of crunchy, textured foods with lots of flavour, that’s me trying not to...
