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Toby’s story

Toby’s story

Toby 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.’

Helen House is more than a respite for us, it’s a sanctuary, it’s family and it’s a hotline to some of the best medical professionals in the country.

We were the last family to visit Helen House before lockdown and at the time everything was very strange and the whole country was entering into a new, scary world. Little did we know that less than two weeks later we’d all be incredibly poorly with covid-19.

We’d already got expert advice from the doctors when we were in the house of what to do if Toby caught coronavirus but when it struck we were terrified.

Physically Toby is in reasonably good shape so we weren’t desperately concerned about the chest infection side, it was the fever that scared us as this is a major seizure trigger.

As predicted, once Toby fell ill he started having seizure after seizure, each one getting a little worse, a little longer, and, following all the advice we were trying hard not to call an ambulance. We were at the end of our tethers, suffering with all the covid-19 symptoms ourselves at the same time acting as medical professionals for Toby and it was just too much.

One call was all it took, within minutes we were talking to senior doctors at Helen House who were giving advice on drugs, protocols, and tips to keep us going. Those calls kept coming over the next few days as we nursed Toby through the worst of it.

It’s fair to say that without the medical support from Helen House we would have had to go to the hospital, something we just couldn’t face in our poorly state, we owe them so much.

Lockdown has been a difficult time for us and families like us, we have specialist support from the school, respite nurses, and grandparents who keep us going on a day to day basis and this has all, understandably ceased.

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