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Toby’s story

Toby’s story

Toby is five-years-old and lives at home in Buckinghamshire with his mummy and daddy, Kim and Tim. He has a complex neurological condition called Dravet Syndrome, which means he experiences very frequent and severe seizures.

Kim said: ‘I guess the reality of why coming here is so important is that we can’t ever leave Toby and you can’t ever take your eyes off him. He could have a seizure at any point and he stops breathing quite often, in probably one out of every two seizures he needs resuscitating. Only Tim and I trust each other to do that when we’re at home.’
The family was referred to Helen House by their Health Visitor in October 2014, when Toby was 11-months-old. When they first came to Helen House before Christmas, they felt they had run out of options. Toby’s seizures were getting worse, lasting over an hour and increasing in frequency. Kim said ‘Helen & Douglas House picked us up out of a deep dark hole and got us on our feet again.’

Tim said: ‘It is a relief not to be a constant carer. Helen & Douglas House is a lifeline. It is the best care we have ever had. It is how we survive.’

Asked what impact it would have on them if they didn’t have Helen & Douglas House, Tim said: ‘The breaks at Helen House keep us sane. They allow us to be the people we are. We’d fall apart without it.’

‘With the help of Helen & Douglas House we’re in a very different place than we were 12 months ago.’

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