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Meet some of our children

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Did you know that a brain tumour diagnosis in a child is life changing event for the child, their family, friends & their community?


Childhood brain tumours introduce permanent early onset disabilities in a child that affect mobility, sight, hearing, speech and language. 


London Borough of Hillingdon Mayor's Chosen Charity - 2022/23.

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March is Brain Tumour Awareness Month (BTAM)

Childhood brain tumours are unlike other cancers. 


Childhood brain tumours are unlike any other childhood cancer.  They are rare and complex diseases which according to NICE, are responsible for 1 in 5 childhood cancer deaths in the UK.  About 498 children will develop brain tumours each year and childhood brain tumours are one of the six Less Survivable Cancers (LSC) today.  The signs  & symptoms of childhood brain tumours are often non-specific and sadly easily missed or diagnosed late.  Sadly, 90% of our families experienced a misdiagnosis or late diagnosis. 

Nothing really prepares the child or their family for the changes they will encounter after diagnosis.  The emotional shock of the diagnosis in the child, often leaves the family feeling devastated, with a lingering sense of grief or despair at the impact of this diagnosis to their child's life.  Children with brain tumours are known to deteriorate faster and within a shorter period. Sadly, many children with brain tumours will loose their mobility, sight, hearing, speech and language within a short period. 

Help us reach more children, young people diagnosed with brain tumours and their families. 


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Hope, Faith & Love

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We offer spiritual support which is much so more than religion... 

When a child is diagnosed with a brain tumour or cancer, questions arise.  Difficult questions.  Irrespective of whether they have a belief system, Faith or no Faith. 


We are committed to providing non-judgmental support to help each child and their primary care givers, to unpick some of those questions that might catch them off guard.


Please click on the button below to learn more. 

What Does Spiritual Support Mean?

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"Ambulance, emergency surgery, waiting, recovery, waiting, more scans more tests, waiting, Will he open his eyes? Will he speak?" 


 "Can he swallow? Can he use his left arm? Can he hear me? Is he hurting? Will he ever be able to walk? Will he make it through tonight?"


"Question after question after terrifying question."




Catherine

(DLF Mum)

"I feel disempowered..."


That's what many of our families tell us they feel, disempowered.  They tell us that it feels as if they have been thrown into a whirlwind of new medical information, have to adjust to several hospital clinics that often feels fast paced and difficult to keep up with.  For many months after diagnosis, many still feel lost and on operating on auto pilot!  With more questions than answers, our children and their families are hesitant to ask important wellbeing questions that matter to them for fear of being seen as argumentative or disruptive.  Holding back their emotions, only increases feelings of anxiety, fear and builds resentment as trust between their child's medical teams become negatively impacted.  This can be prevented by incorporating holistic wellbeing support alongside children's palliative care.  Children and families can feel emotionally drained, angry, depressed, as if they have no time to adjust.  This enable guilty feelings and emotional neglect that can lead to longer term trauma like depression or thoughts of suicide if left unaddressed.  The child remains at the centre of this negative emotional environment.



Your donation will fund our services and help us reach our children and their families with more emotional, spiritual and physical (practical) support when they need it.  We offer group sessions and family support groups.  We coach families on how to work through and express their emotions, connect with therapeutic support and stay connected to peers to reduce feelings of isolation.  We educate our families, to teach them wellbeing techniques and how to cope with the pressures of caring for their children with brain tumours/cancer.  Our wellbeing support service can help children and families rebuild their wellbeing, self-confidence, overcome social & cultural stigma, anxiety and the emotional wellbeing that many of our families constantly tell us about.  We are here to help our children and their families access the holistic wellbeing support that they need when they need it.


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Hope, Faith & Love

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To remember  the children who have passed away and to support their parents and siblings.

Thank you to the Worshipful Mayor Cllr Shehryar Ahmad-Wallana, the Brunel University Volunteer Department, our community of #TeamDLF volunteers friends and well wishers who joined our fun bike ride and are committed to raising funds to support the families of our children who have passed away, and support those with terminal cancer to afford essential food and clothing.  Thank you everyone!


Help us build stronger local networks, reach corporate sponsors and cycling champions and do more.  Read more here thanks.

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Don't Let Them Lose Hope!


September is Childhood Cancer Awareness Month (CCAM). 

Help fund our work to go gold in September for CCAM and host a free family fun day to raise awareness of the wellbeing support challenges faced by our children with cancer and their families.  Please click here to find out more.

CCAM Just Giving Page

We were the Brunel Volunteers Charity Of The Year in 2022/23.

Your donation will help fund our December Christmas DLF Toy Drive...

Showing love to our children diagnosed with brain tumours, other cancers and their siblings at Christmas.


Every Christmas, we celebrate the season of glad tidings by gifting our children and their siblings with brand new toys!  Thank you to The Hillingdon Hospital, Tesco, SpinMaster, Brunel UNiversity Volunteers and many more community partners who help us make this dream a reality each year.  Please click here to find out more.

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Children diagnosed with brain tumours or other neurological cancers experience major disabilities up to 2weeks after diagnosis.  This change affects how they communicate, and process information.  This means they will more than likely need help learning at school.  According to NHS England, a child or young person has special educational needs and disabilities if they have a learning difficulty and/or a disability, which means they need special health and education support.  This is shortened to SEND - Special Educational Needs and Disabilities.


If you have found that your child's learning changed after they were diagnosed with a brain tumour or neurological cancer, it might be because the way their brain or nervous system controls their learning or cognitive behaviour has changed as a result of the brain tumour or neurological cancer diagnosis.  Parents, your child might need a referral to a SEND specialist.


Please click on the button below to make a referral and speak with our coach for free further information. 

Make A Referral
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