Aim

Families affected by a child’s brain tumour (brain cancer) are 50% more likely to be affected by the COL Crisis - it costs an extra £600 pm

Only 1 in 3 children with a brain tumour will survive more than 5 years, even for survivors this cruel disease is life-changing. Adjusting to life with a brain tumour is overwhelming - children are frequently robbed of their eyesight, hearing, mobility, co-ordination & voice. One parent, often both have been forced to give up work to care for their critically ill child & they are 50% more likely to be affected by the COL crisis. They struggle to afford essential healthcare & household items, clothing, bedding & the healthy foods they need for their critically ill child. The NHS wait list for an electronic wheelchair or stairlift to give a child some independence is 18 months +

For Tristan's little brother Talin there was no hope.  Tristan lost his whole family when the DIPG (brain cancer) caused suffering no family should have to bear & ripped the family apart.

Joss Searchlight is one of the very few charities in the UK with dedicated support services for children with a brain tumour & their families. We are here for everyone affected by a child's diagnosis, children, their siblings, parents, grandparents, friends, teaching & health professionals & our services are run by volunteers who have lived experience of childhood cancers. 

Our support services are individually tailored to suit the needs of families & help set goals. We pair families with someone who can meet their needs, someone who has "been there" & has a real empathy & understanding to help work out the best way forward. 

Support Workers will support families with everything from providing essential healthcare, food & household items, e.g. clothing & bedding, & funding specialist equipment. We’ll give support with accessing the right benefits, signpost for financial support as well as giving compassion and simply someone to unburden with.

Camille had to wear a radiotherapy face mask and receive radiotherapy every day for 6 weeks. The family were split with Camille's mum living at the hospital and her dad at home at home looking after her siblings. Completing benefits forms were mountains they were unable to climb as they struggled to find a path forward and planned live saving treatment in the USA

We heavily rely on our  dedicated volunteers to deliver our services so your donations mean so much to us & a little goes a long way. We need to help relieve some of the emotional & financial strain. 

Funds be used for:

To reach the most vulnerable families

To provide mentoring services, tailored to individual need to help families set goals. We pair families up with someone who can genuinely understand, i.e. they have lived experience of how to help work out the best way forward.

To provide boxes of essential items

To provide group support sessions to signpost to all sources of financial support and peer support workshops with question and answer sessions.

To cover the rent of medical equipment, e.g. electronic wheelchairs (at £50 per week).

Following a brain tumour diagnosis Dylan, a fun loving 4 year old was unable to even hold up her own head & needed specialist equipment.

Children with life changing & life limiting cancers & their families deserve to feel supported. Please help us make a difference. Thank you. 

Visit our website www.josssearchlight.org.uk or email [email protected]

This project successfully funded on 7th June 2023