Family stories

Nora’s story

Published on: 04/12/2023

For Nora’s parents, Tors and Dave, Chestnut Tree House is like having another family member. The support of the hospice means that Nora gets the specialist care she needs, her parents get a break and can just be mum and dad, and her brother can meet other siblings who understand.

Nora’s parents share their story with us:

Montage images of Nora with her mum and with her dad

“Nora’s brain is quite chaotic and unwell”

Our daughter, Nora, is a chilled and content little girl. She loves swimming, having her nails painted and being around people – especially her big brother, Harry.

Nora was just six weeks old when we noticed she was making some jerky movements. At first, doctors didn’t think it was anything to worry about, but then tests showed some seizure activity. After months of investigations, we were told Nora had epileptic encephalopathy and that it would be very unlikely we’d ever be able to control her seizures and she would probably never learn to walk or talk. Hearing those words as new parents was just devastating. We had no idea what the future might look like.

“Grit and glitter – that’s Nora”

Seven years on and Nora still has daily seizures. Some of them are pretty big, but thankfully none have compromised her too much. As she’s grown, it’s actually problems with her chest and gut that have hospitalised her the most, rather than her epilepsy.

We’ve had quite a few stays in hospital, including three spells in intensive care. During one admission in Summer 2021, Nora had a chest infection so severe that we had to have some very tough conversations with consultants – we really didn’t know whether she would come home. Incredibly, after almost four months in intensive care, she pulled through. That’s the thing about Nora, she’s determined and surprisingly robust. We like to say that she’s made of grit and glitter.

Nora and family out and about

Listen to their story

Complex is a BBC Radio 4 mini-series focusing on Nora and her family. Documenting the round the clock care Nora needs and how this affects the whole family, plus interviews with Chestnut Tree House staff and families.

Catch up on BBC Radio 4

“There’s no treatment that can cure her condition”

It was during that stay in hospital that we first heard the word ‘palliative’. It was hard accepting that you need support from a children’s hospice because immediately you think of end of life, but since being referred to Chestnut Tree House in 2021 we’ve found the opposite. Chestnut Tree House has given Nora and the rest of us so much to enjoy, and helped us to make some wonderful, fun memories together.

Before Chestnut Tree House, there was no one else who could look after Nora when she’s not at school. It’s not fair to leave her with family members because she needs constant care – everything from regular medication to physiotherapy, managing her seizures and preparing her blended meals because she’s tube fed. The only time we can ever switch off is when there’s someone professional looking after her.

“You have to know Nora really well to be able to read her”

Nora is non-verbal. She can make meaningful movements, but they are in amongst jerky movements and seizures, so you have to interpret what she’s telling you through her responses and her breathing.

When Natalie and Helen from the Chestnut Community Team visit to look after Nora, they understand her so well that they can easily pick up on cues and know when she’s happy and enjoying herself. Occasionally, Nora can throw a curveball which can be impossible to detect for most people, but they know straight away if something is wrong. As parents, that is so reassuring.

Montage of Nora and her brother with an owl

“She’s with professionals, doing stuff she loves”

Most importantly, when Nora is with Natalie and Helen, we know she is having fun. When they arrive, her face will light up and on a good day she’ll give them a smile. They’ll usually spend the day together at the beach or at Chestnut Tree House.

Nora’s absolute favourite thing is swimming. When she’s in the hydrotherapy pool at Chestnut it’s one of the few times where she feels complete freedom. The warm water gently supports her and for once she doesn’t have something or someone touching her. Nora’s seizures mean her muscles can be quite tense, but when the Chestnut team drop her home, she’s always so much more relaxed after a swim. And whilst she’s been out for the day, we’ve had a chance to build up our strength and energy to be able to continue looking after her.

“When you have a child like Nora, you realise how inaccessible the world is”

Like any family, we want to meet friends for lunch or go to the park, but it’s not that simple as we need to know if where we are going is wheelchair accessible, if there’s changing facilities and space where we can lay Nora down, and prepare her food and medicines before we go.

When we visit Chestnut Tree House, we don’t have to worry about any of those things. There’s an accessible adventure play park, which Nora and Harry can both enjoy – it’s the first time we’ve seen Nora on a wheelchair trampoline, and it turns out she likes roundabouts too! Sometimes we’ll stay at Chestnut for a few days as a family and the team will look after all her care needs so we can just focus on having fun together. There are so many inclusive activities on offer and this summer Nora and Harry got to meet lots of exotic creatures at the Reptylers event, watch Julia Donaldson perform her stories, get covered in foam at Mega Messy Play, and listen to live music at the Chestival summer party.

Image of Nora's sibling and friends in a huge bubble bath

“Chestnut is a big part of Harry’s life too”

Harry loves being at the hospice just as much as Nora. In some ways he can feel quite lonely having a sister he can’t run around with, bounce ideas off, or get annoyed by. But at Chestnut he can see there are lots of families like ours and he’s made great friends with other siblings. There are fun trips out and events just for siblings and instead of feeling ‘othered’, it’s helped normalise things for him.

Sometimes Nora will stay at Chestnut for a few nights on her own and we’ll use that time to indulge Harry and do something we can’t with Nora. Like recently when we went to see a show and had a day out in London. We miss sharing the experience with Nora, but when we pick her up from Chestnut, she will have had the best time hanging out in the sensory room, exploring the woods, having bubble baths and getting pampered.

“Without Chestnut, families wouldn’t cope”

Knowing that we have Chestnut is like having another family member. We can genuinely relax and have a break knowing that all Nora’s health needs will be met. And just like with family, we feel totally accepted and like we can show up as ourselves even on a bad day.

We don’t know if we’ll have 18 more summers or one more summer with Nora. We can’t think like that because it takes all the enjoyment out of life. What matters is making the most of the precious time we do have and that’s what Chestnut Tree House allow us to do. Without them, families like ours wouldn’t cope.

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Almost £6 million is needed every year to provide hospice care for local children and their families. Very little of this comes from government funding, the rest comes from the amazing donations we receive. We couldn't do it without you.

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Image of Nora and her mum