SUDEP Action

Making every epilepsy death count
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I lost my girl Isabella (Bella) aged just 16 in June 2018.

It all started when she was around 7 years old. She kept falling over, then she would have these strange jumps, they increased to night seizures, which then increased to tonic-clonic seizures. After countless trips to the hospital, and drug after drug (that just did not work), our only hope was surgery. So, then we started all the tests that were needed.
All the time, she was getting worse, practically housebound for the last year of her life. 

She denied having anything wrong with her, she would never say the word ‘epilepsy’. She hated it all, the drugs, and the sheer hopelessness of it all. All she wanted was to be like all the other teenage girls, into makeup, snapchat and all the other stuff girls her age were doing, instead she was black and blue from all the seizures. 

The 15th June 2018 was a hot sunny day. I got a phone call from my son, Joe, to say he could not get in the house. So, I said I would ring Bella to let him in.
She didn’t answer, so I texted her.
Again, no answer, so I was getting mad because I thought she was being awkward (she could be at times). I then left work to go home to let Joe in.
I went upstairs shouting for her to say ‘why wouldn’t you let Joe in?’.
I found the bathroom door locked and she had all her creams and potions she’d put on after a bath all laid out on her bed. My heart just sank - I knew.
I had to break down the bathroom door, and there, submerged in the bath, my beautiful 16 year old daughter Bella - gone from my life forever. 

There was an inquest, September last year which confirmed the cause of death SUDEP. 

I didn’t let her have baths on her own when we weren’t in the house, but she was stubborn, and just wanted to be “normal”. She couldn’t have a shower as that was too dangerous, she loved her baths, she didn’t have much enjoyment in her life, so a lot of the time we would give in to her. 

I’m glad she’s not suffering anymore and she’s free of the seizures.
But we all miss her so so much. 

Carol (Isabella’s mum)

We understand that this My Story (and any of our other My Story articles) can stir up some memories and emotions of your own experiences.

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