5 minute read

Children's Hospice Week 2023

Blog Post Images Children's Hopsice Week 03

Children’s Hospice Week is back for 2023. This dedicated week to raising awareness and shouting about all the amazing fundraising and special work that these incredible places do, takes place on 19th to 25th June. 

Children's Hospice Week

So what happens at a children’s hospice? 

Hospice UK explain that when a child or young person has a condition that means they are not expected to reach adulthood, they can be cared for by a hospice. 

It includes looking after the physical, emotional, social, educational, and spiritual needs of children and their families, by managing symptoms, providing short breaks, end of life care and bereavement support.

Many children’s hospices throughout the UK are only partially funded by the NHS and rely solely on local community’s love, hard work and dedication with fundraising to help them receive the funds needed.  

The theme for this year’s Children’s Hospice Week is about supporters pushing themselves to the limits so children’s hospices are not pushed to theirs. Families with seriously ill children are pushed to their limits; and with more and more children needing care, children’s hospices are being pushed to their limits to provide this. On top of increased bills and cost of living payments that the charities face on a daily basis. 

How can you help?

Can you push yourself to the limit and raise these vital funds, playing Your Hospice Lottery for only £1 a week? 

Your Hospice Lottery have 2 partners:

  • Noah’s Ark Children Hospice based in North London, provides care to over 350 babies, children, and young people with life-threatening or life-limiting conditions, and their families, make the most of every day.

Playing music to a baby at Noah's Ark Children's Hopsice

Family

Precious’ Story

Diagnosed at only 20 weeks and born at 35 weeks, the start of Precious’ life was filled with the phrase ‘will never’.

Will never be able to live off of a machine.

Will never be able to see.

Will never be able to swallow.

Will never be able to express herself.

Almost nine years on, both Precious and Noah’s Ark Children’s Hospice have grown and reached new levels of possibility that would have been difficult to imagine all those years ago.

Precious, a child supported by Noah's Ark Children's Hospice

Precious is able to spend a lot of time off her oxygen machine and no longer requires her saliva to be suctioned. She can swallow and can even enjoy yoghurt – her favourite flavour is tangerine. She can see the lights that Vikki, Noah’s Ark’s Play Specialist, moves over her face and is able to recognise Vikki through the perfume she wears. She makes it very clear when she wants to move onto a new activity by making noises. She loves being cuddled. And, like most children, is calmed by her teddy.

Noah’s Ark Children’s Hospice has also transformed during this period. Going from a service offering only community-based care, to a care provider partnering with leading NHS trusts, providing a much wider breadth of care in multiple settings. This includes The Ark, our award-winning, state-of-the-art children’s hospice building.

Despite everything that has changed, what has remained the same is Noah’s Ark’s consistent support. As Esther explains:

“Where things have been hard for us as a family, Noah’s Ark have always been there for us. I have a lot of faith in them, because when we have been struggling they always find a way of helping us or to get somebody else to help us.  I really, truly, appreciate each and every thing that they have done for us.”

Raph puts it simply: “I can’t think of a single time that they have let us down.”

Elsa’s Story

“Elsa is two and a half years old. She was born a perfect child. Things were ok, we had no worries, and everything was going fine, as it should be. Then when she was four and a half months old, I was at home on my own with her and she suddenly had a seizure.

Elsa, a child supported by Zoe's Place Baby Hospice Coventry

I’d pick her up and she would be like a rag doll. She wouldn’t be able to move really. She was that lifeless. And then occasionally some days her eyes were shut, then when she opened them her eyes were rolling in the back of her head, it was absolutely awful.

We thought, this can’t be right? How could she have gone from this perfect child to how she is now?

Our world changed forever when we received the results of genetic testing. They said that she’s got this genetic problem and she won’t be able to do all the things we talked about, and she won’t make it past childhood.

Elsa was 8 months old, and somebody in her team said that there was an opportunity for her to go to a hospice, and that she would have respite care. At first obviously we hated the word ‘hospice’. You think to yourself ‘absolutely not’. When you hear someone telling you that, that meant you need help with your child, and you think ‘absolutely not’.

But, I agreed to head over to Zoe’s Place Baby Hospice Coventry, just to talk to everyone and have a look. I was instantly surprised. Everyone was so lovely and so approachable. It’s such a warm happy place. It’s a lifeline.

Even just a couple of nights off, it’s just time to switch off. I think it’s great for Elsa to have a place to go where she’s given this incredible care. Not only are they all medically qualified. They’re just the most caring people. She has the best time there; she gets to do all these activities that otherwise wouldn’t be open to her.

Because they have such impeccable care, it gives you time to rest. Even if its just 24 hours. You can come back 100% and be there for her again. Which is the most important thing.”

Making a difference in YOUR local community

The hard work, passion and dedication these hospices bring to the local community for those who need it most, is vital and YOU can make a difference today. 

Playing Your Hospice Lottery in support of these incredible partners for just £1 a week, can keep these charities going and they can concentrate their efforts on the fantastic care they can provide to babies and children who are seriously unwell. 

Find out more by visiting their websites below:

www.noahsarkhospice.org.uk

www.zoes-place.org.uk