The latest news from Together for Short Lives for families and carers.
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Dylan's story
“Dylan was always a calm presence, and as first-time parents, it was the happiest time of our lives. We went up mountains, spent time in the ocean and drove around Australia. Life was so good. Looking back now, it just feels…innocent. We had no idea what was coming. But it was life-shattering. There is no other way to describe it.”
In October 2020, Dylan’s family received the news that their son had Sandhoff disease, a rare, inherited disease that progressively destroys nerve cells in the brain and spinal cord.
The chances of having Sandhoff are one in 1.2 million.
The family felt psychologically and socially isolated, navigating a new diagnosis, the Covid pandemic and frequent hospital admissions.
Until they found Haven House Children's Hospice: “It devastates us to think that not every family gets to have experiences like this. Without our hospice, there would have been nothing. We would have never got this far.”
Video diaries
We are grateful to mum Carolynne and her daughter Freya for sharing their story with us through a series of video diaries. You can watch all 7 episodes here.
Father's Day
On Father's Day we shared a blog from dad, Dan:
“What makes being the father to a disabled child different? Beyond all the traditional values of love, compassion, protection and sacrifice, is the complexity of what we must do to achieve these seemingly simple things.”
Sibling workshops
We are hosting three online workshops this year with the charity Sibs. Our June event was a sell-out but keep an eye out on our social channels for the events in August and November.
We will send you a special pack of free items (pictured) to help parents spend time with their sibling child.
Free bounce event
We're inviting families caring for a child with a serious illness to a free Bounce and Climb session at Gravity Trampoline Park, Milton Keynes on 25 June from 9-11am.
The event is for children with life-limiting and life-threatening illnesses and their siblings. Spaces are limited. Please get in touch (latest 11am on 23 June) if you would like a ticket:
Lisa - 07859 792573 / Zoe - 07478508491
The Willow Foundation
The Willow Foundation supports young adults aged 16 - 40 who are living with a life-limiting condition. They offer a range of experiences such as special days out, special breaks, special days at home and special treats. We can refer families to The Willow Foundation and they will contact you to see how they can best support you with a special experience.
Financial grants
Some families on a low-income are able to access a special grant from Turn 2 Us if they have had a life-changing event within the last year which can help them to pay for items needed to maintain normal daily living.
For example flooring, moving costs, and shelves for medications.
Free food shop
If you are caring for a child at the end of their life or have been bereaved in the last few weeks, we may be able to support you with a free weekly food shop.
We are the only UK wide charity making referrals to the team at Rosie's Rainbow Pantry, who can provide a week’s worth of shopping delivered straight to your home to help you through this difficult time. It’s free and the food is chosen especially for you, so you spend less time in the kitchen and more time together.
Get in touch with us directly, to see if we can help you.
Call: 0808 8088 100
Email: helpline@togetherforshortlives.org.uk
Meet the Community Outreach Workers
“We hope to be there alongside families on their journey, helping them navigate all the information and support they need.”
Thank to Morrisons partnership fundraising, we’re excited to introduce our three new Community Outreach Workers: Lisa, Sajda and Lisa.
These vital new roles will help us reach new families that need support and connect them to local palliative care services.
Read more about our Community Outreach Project here.
Family Experts needed
If you are a parent, carer or family member of a child with a life limiting or life threatening condition we need your help. Join our mailing list and become a Family Expert and we will email you opportunities to shape our projects, take part in research, and a chance to get your voice heard. You can be involved as little or as much as you like. Register here.
- Urgent: Sign our Children's Hospice Grant petition (below)
- New SEND improvement plan
- Hewitt Review Published
- Government holds back on care funding
- Scottish government urged to take Cost of Living action
- Up to 12 weeks of extra leave and pay for parents
- And much more
It's Children's Hospice Week!
Our new research released this week shows that England’s children’s hospices will cut critical services such as end of life care, respite and symptom management should the Children's Hospice Grant be cut.
We've been in Parliament speaking to the MPs and Ministers calling on the Government to commit to saving the children's hospice grant and ensuring that children's hospices won't be forced into cutting vital services for families.
Britt, a parent who uses Shooting Star Children’s Hospices, and Liam, a young man who uses Claire House Children’s Hospice, both attended the lobby day.
Centre Parcs partnership extended
We are thrilled to share that our friends at Center Parcs have extended our partnership for four more years! Since 2016, they have raised an astonishing £1.7m for the UK’s 54 children’s hospices and gifted over 100 families breaks at their villages. You can read about the difference these breaks make on the Center Parc’s website.
Walk 99,000 steps
This week, during Children’s Hospice Week, thousands of people are putting their best foot forward in our epic 99,000 Steps Challenge – a step for every seriously ill child in the UK. With every stride, every step, every tread, they are walking for incredible families like yours. If you'd like to join in, no matter how many steps you do, simply visit our 99,000 Steps website.
Cadbury World trip
The Morrisons partnership team recently joined families from Acorns Children's Hospice on a trip to Cadbury World. This fantastic outing provided a much-needed day of joy and excitement for seriously ill children and their siblings.
New Transition resource
The information in our guide to transition for parents, which you can download or order for free, aims to help parents to think about the different elements of transition that need to be planned for and to provide tips to help the process feel as smooth as possible.
Free and confidential helpline:
0808 8088 100
Email:
helpline@togetherforshortlives.org.uk
Live chat:
www.togetherforshortlives.org.uk
