THE CHILDREN'S BRAIN TUMOUR CHARITY

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Financial Grants

There is no shame in admitting you need help

There are many sources of financial help available from the government and from charities

At Joss Searchlight you and your family are our priority. Our team are here to support you and we have many services available.One of the most important things you can do as a parent or guardian is take care of yourself, too. It can be difficult to focus on yourself when your much loved child is undergoing treatment.

We acknowledge that many families are in a desperate situation this winter. With all the additional costs of living with childhood cancer (estimated at £600 per month), feedback from our community groups suggest that our childhood brain tumour community are struggling to  cope the the basic cost of living. Two thirds have advised they were worried about the increased cost of food and how they are going to avoid it. 

Families in remote areas may have to travel 30+ miles for cancer treatments and with public transport not being an option due to infection risks this is costly. No family should have to worry about the increase in fuel costs to get their child to hospital.

Disability Living Allowance

We’re urging the newly diagnosed not to delay in applying for ‘Disability Living Allowance’ as payment can not be back dated and there is currently a four month delay in families receiving the payment. DLA for children claim form. You can get between £24.45 and £156.90 a week in Disability Living Allowance (DLA) to help look after a child who has a disability or health condition. DLA isn’t means tested, so how much you earn doesn’t impact how much you can get.

Disability Living Allowance (DLA) for children may help with the extra costs of looking after a child who is under the age of 16 and has difficulties walking or needs much more looking after than a child of the same age who doesn’t have a disability.If you already get DLA for children but your child’s condition has worsened and they’re not expected to live more than 12 months, you need to report a change of circumstances to the Disability and Carers Service. If you’re eligible, you could get Universal Credit or Employment and Support Allowance at the same time as DLA for children.


Discretionary Reduction in Council Tax

If you’re struggling to pay for basic essentials your local council may use ‘discretionary reduction’ to reduce your council tax bill. As parents if you have ceased work to care for a critically ill child and can show that you are suffering severe hardship ask your local council for help, they may write off your annual bill. If you already receive DLA for your child and your child’s condition has declined and they’re not expected to live more than 12 months, you need to report a change of circumstances to what used to be the Disability and Carers Service which is now DWP.

If eligible (means tested) you can also apply to receive Universal Credit and/or Employment and Support Allowance in addition to DLA.

Citizens Advice

Citizens advice can also help you get to grips with how much benefit you can access.  You may be eligible for a carer’s allowance and Citizens Advice can help you with this. 

Advisors can answer your questions about claiming benefits and help explain what financial support you might be entitled to. Tel.: 0800 144 8848

Joss Searchlight Cost of Living Crisis Grant

We are concerned that families may decide that they can’t afford the fuel to get to hospital appointments or may struggle with the increased cost of energy and food so we have designated a grant fund to support families. The fund will be means tested to ensure a fair allocation of funds. 

The grant helps families struggling to pay bills, additional discretionary vouchers may be donated for food and clothing and in kind goods supplied (subject to availability)

Eligibility

Families of children diagnosed with a brain tumour in the past 3 years and those with untreatable tumours. One-off grants will be available of up to £200 for household incomes up to £25,000. An additional amount at the discretion of the trustees may be made if household incomes are below £20,000

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Help Joss Searchlight give support to families and find a cure for rare brain tumours

Leo Middleton, Joss Searchlight

Leo’s Story

n November 2020 Rebecca took her 5 year old son to school one morning, not knowing that later the next day they would receive the most heartbreaking news – that Leo had an incurable brain tumour.

Yes I would like help from Joss Searchlight Grant Scheme

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Fighting to make all brain tumours curable

Zach's Story

Zach was diagnosed with a rare brain tumour called Diffuse Intrinsic Pontine Glioma (DIPG) when he was just three years old. Joss Searchlight visited the family shortly after diagnosis.

Zach’s mum, said: “Zach didn’t speak very well as a toddler and when his right eye developed a squint he was given glasses and an eye patch to strengthen the eye” However Zach’s symptoms progressed and his parents were eventually given the worst news, that Zach had an inoperable brain tumour.

With no cancer treatment options available his parents agreed to Zach being part of a ‘clinical trial’. The aggressive drugs affected Zach’s immune system and his parents were distraught to be  told Zach was unlikely to survive more than 24 hours. Zach did survive, however his speech and memory were affected.

Zach was happy until his cancer progressed and no treatments were offered. Zach tragically died age 6

Joss Searchlight arranged for Zach to meet his hero ‘Diago’ at Nickelodeon World (A children’s interactive educational series on children’s TV). It was following this family holiday that his mum contacted our charity and said “Zach stopped speaking when we went to Blackpool completely and it hasn’t returned. As you can imagine he becomes really frustrated as he can’t communicate to us.  Obviously we feared the worst with the tumour but thankfully he has had two MRI over this period and the tumour remains stable”. Although the tumour was stable, doctors at Harley Street feared the swelling in Zach’s brain to be treatment related.

After much persistence with doctors and education authorities Zach was offered a place at a school for children with moderate learning difficulties and the wonderful opportunity to join their signing program. Zach was happy until his cancer progressed and no treatments were offered. Zach tragically died age 6.

Zach’s mum said: “A high percentage of children don’t survivor DIPG for more than a year. Zach has proven there are exceptions and his dad and I are very proud of the way he has coped with everything he has had to face.”

His mum would like to see more awareness and research into DIPG

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