Toby’s August 2018 update

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...

Toby’s July 2018 update

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...

Toby’s June 2018 update – a big ‘thank you’

  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...

Toby’s May 2018 update

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...

Toby’s April 2018 update

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...

Toby’s March 2018 update

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...