Devastating impact of childhood brain cancer

"When we ran out of oil we had to put heated blankets on Anastasia as she was turning blue"

 The family saved £1,000 to make Anastasia's last Christmas special but that was eaten up beforehand with food & heating costs

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

Children with brain cancer are frequently robbed of their eyesight, hearing, mobility, co-ordination, mobility & voice.  We do our best to lessen the devastating impact on families but we lack the resources to cope.

ABOUT US:

Twelve years ago, a legacy began. Around a kitchen table, the loss of 10 year old Joss  to a cruel brain cancer sparked what would become Joss Searchlight, one of the very few national organisations supporting all families affected by childhood brain tumours, malignant & non malignant.  There are some 16 support charities in every county of the UK to support adults with one of the ‘big 5’ cancers but we're one of the very few charities supporting families affected by child brain tumours. We hold a unique position in the brain tumour community. The lived experiences of our trustees & senior management, together with our 'Common Experiences' program gives us an extensive understanding of our family community. We are supported by 44 incredible volunteers.

SITUATION:

Chills, fever & persistent coughs are common for children with brain cancer

The COL crisis is having a devastating impact on the 1,600 families in the UK struggling to cope with a child’s brain cancer.  Every day, families are contacting us struggling to make ends meet. Over three quarters of families have one parent who had to cease work in order to care for their sick child, in 18% of families both parents have to stop work completely & are completely dependent on benefits for their household income. 

Parents make huge personal sacrifices to support their critically ill child & family members frequently experience poor life outcomes & risk living in poverty. 

Parents often feel isolated by the relentless trauma & feel they can no longer cope, some are  in the heartbreaking position of being unable to provide for their family.

COMPLICATION:

Brain cancer families face high financial costs averaging at an additional £730 per month. 

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

We need to raise more funds to cover the rent of medical equipment, e.g. electronic wheelchairs (at £75 per week).

 In additional to the COL crisis, families face out of pocket costs such as specialist equipment not funded by the NHS, nutritional supplements for side effects of chemotherapy, nutritional foods to maintain weight, transportations, hotel bills, loss of employment affects families very significantly. After cancer treatment has ended, it is very difficult for the parents to find new employment or return to their previous jobs. Many families have to live on their children’s disability allowance.

SOLUTION

We know it takes huge courage for families to ask for help,  so we work with families to  help them find solutions. 

It’s vital that we have the resources in place to give families the urgent support they need to face the immense challenges ahead. We’ll provide free, compassionate, confidential support , for as long as a family needs it. We want to make sure that no family has to face this devastating situation alone.Families are able to access the ongoing support of a Support Worker, receive guidance & referrals to other service providers . Our project  seeks to help with finances, wellbeing, food, bedding & essential items. This enables us to provide meaningful, tailored support to help navigate the COL crisis. 

On average we estimate every family helped will be £5,000 better off per annum.

Key Aims.

• Parents on no/ low incomes  will be enabled to access funds from state & charitable sources & find the resilience to cope. They'll be helped to better understand their options & reduce their costs. 
• Families on our emotional wellbeing programmes, who are struggling with troubling experiences & emotions will learn new skills via  peer group support sessions & 1:1 support.
• Enhance  our online, self-service web information empowering families  to find a way through their financial crisis without necessarily having to speak to a Support Worker, therefore creating time for those who need more urgent crisis support.

Alex’s daughter Anastasia was diagnosed with an incurable brain cancer and given perhaps 12 months to live. Anastasia’s parents  chose to keep the family together by caring for Anastasia at home. Alex said that even as her daughter’s condition deteriorated she was struggling to afford to keep the heating on due to the cost of living crisis. 

Alex (a support worker) speaks of her own personal crisis after her daughter Anastasia was  diagnosed with a deadly brain cancer.

“The cost of living  just skyrocketed,” Alex said. “We’ve had to turn the heating off twice. We just want to spend time with her but all my time was spent worrying”

 “Anastasia was getting towards the end of her life and we were still having to rattle around for money. Our heating went gone off twice as we had run out of oil. It was just impossible.It got so bad we were all camped in her room with a wood burner. We were throwing wood on the fire to make the room warm enough to get through the night.When we ran out of oil we were having to put heated blankets on Anastasia because she was turning blue. There are weeks when we can’t afford basic things. ”

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]