If you would like to talk to someone about epilepsy, our trained advisers are here to help.
“My son was born with a brain tumour and associated hydrocephalus, a build-up of fluid on his brain. He’s had eight brain surgeries, the first being when he was less than a day old, and countless other medical interventions. After his sixth operation, Bleu woke up and couldn’t move his right side and his mouth had dropped on that side.
This caused him to have right-sided hemiplegic cerebral palsy and following this, years of rehabilitation with physio, occupational therapy, speech-language and visual therapy. Two years ago Bleu was diagnosed with autism spectrum disorder, meaning that he can find certain sounds, foods and environments overwhelming and upsetting.
Last year in May, Bleu started having seizures and a week before Bleu was started on epilepsy medication, he went into status epilepticus for two hours. Since then, Bleu has been on a mixture of different medications but unfortunately the seizures haven’t completely stopped. He still has around sixteen seizures a month and has to sleep with a seizure alarm.
Despite everything that life has thrown at him Bleu is a bubbly, cheeky 6-year-old, and I’m so proud of how he has overcome so many difficulties. He fights on and finds happiness in the smallest of things, taking it all in his stride. He’s learnt to speak, has started reading and has now also made the transition to mainstream school.
My best friend, Lucie, and I decided to do the Jog 30 Miles in June challenge to give back as Epilepsy Action is a charity that is close to our hearts. We’ve enjoyed the challenge and have found that jogging is a great way boost your mood and clear your mind when going through stressful situations. This is especially important when caring for someone with a disability and additional needs.
Although we live with a constant anxiety about Bleu’s seizures, it doesn’t stop us from trying new things and finding something to laugh about every day. Bleu is our absolute world, and we pull strength from his bright smile and inspiring attitude to life.”
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