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Toby’s story: “Our hospice is our sanctuary”

When the unimaginable happened, and little Toby had Covid 19 symptoms, his parents who were also feeling unwell, had to care for him at home without their usual family support system.

Toby has a complex neurological condition called Dravet Syndrome, which means he experiences very frequent and severe seizures. Having Covid 19 symptoms only made his seizures worse and his parents Kim and Tim battled through their own symptoms to help their son feel better.

The family relies heavily on the support provided by Helen & Douglas House and this was more important than ever when the family were having to come to terms with Toby’s symptoms getting worse.

Tim said: “Once Toby fell ill he started having seizure after seizure, each one getting a little worse and a little longer. We were following all the advice and trying our best not to call an ambulance, but were at the end of our tethers. We were suffering with Covid 19 symptoms ourselves, at the same time acting as medical professionals for Toby and it was just too much.”

This is when a Helen & Douglas House doctor was called. Thankfully the hospice were able to give the family advice on the drugs and protocols for Toby and the support to keep them going. They continued to call the family over the next few days as Tim and Kim nursed Toby through the worst days.

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

Tim, Toby's Dad

To Toby and his family, their hospice is more than a place for respite, it’s their sanctuary: “It’s family and it’s a hotline to some of the best medical professionals in the country.”

As soon the family’s symptoms eased, they were left fatigued but continued to stay in isolation. This is when the hospice were able to send them a care package. The parcel included essential food items, toiletries and treats, as well as play therapy items for Toby.

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

There are no limits to what Helen & Douglas House will do for families like Toby’s.

But right now, hospices are being pushed to their limits. More and more families need their help – and that’s why we need you to push yourself to your limits by fundraising or making a donation directly today.

Will you push yourself to your limits, so children’s hospices aren’t pushed to theirs?


Family stories