Everyone that knows Oscar knows he has not had it easy for the past 4 years. 2020 has being particularly difficult for him. 

He had an EEG scan on his brain in January and they found that he was having constant seizure activity while he was asleep called Electrical Status Epilepticus in Slow Wave Sleep. To try and combat this he was immediately put on a high dose of steroids initially for a month. These had an effect for the first 2/3 weeks and we had our happy Oscar back. Unfortunately these soon stopped working as efficiently. The specialists found that he is having epileptic activity pretty much all the time he is awake and while he is asleep. We can’t see these seizures as they are happening so we are adjusting his current medications to hopefully see a difference. 

After various consultations through April and May with epilepsy specialist consultants in Halifax and Leeds and starting a new medication, they finally diagnosed him with a variant of epilepsy syndrome Lennox Gastaut. A rare type of epilepsy. He will hopefully be starting a trial with a new medication and treatment in August 2020 once we have sorted out the volume and concentration of the various medications he is already on. Which fingers crossed will have the desired effect on his seizures. 

He has overcome so many obstacles already and we are not going to stop now we will keep fighting for a seizure free day, for now seeing his infectious smile and knowing he is happy is the most important factor to us. 

Now, I’m no mountain climber so climbing Mount Kilimanjaro is going to be one hell of a challenge. So any donations for Epilepsy Action are hugely appreciated! 

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