THE CHILDREN'S BRAIN TUMOUR CHARITY

Mikayla’s Story

Mikayla was diagnosed with a rare and inoperable brain cancer (a Ganglioglioma) when she was 4 years old. 

Ganglioglioma is a rare brain tumour with both glial cells (responsible for providing the structural support of the central nervous system) and neuronal cells (the functioning component of the central nervous system). Ganglioglioma is a low-grade glioma, i.e. it is cancerous but slow growing.

Joss Searchlight met Mikayla when she was just 6 years old. She’d returned to school following a round of chemotherapy which caused total hair loss. Mikayla wore a wig.  

Mikayla decided to address the issue of losing her hair to avoid being jeered at. On her first day back at school Mikayla removed her wig and said to her school friends ‘I’m bald, right. I’m bald because of my chemo. I want to tell you this now, I don’t want to tell you this later”. It was such a brave thing to do and it helped Mikayla’s class mates to accept Mikayla’s hair loss and never jeer at her. Mikayla’s return to school was certainly eased by her ability to talk about her cancer.

Following the diagnosis Mikayla was quickly started on chemotherapy and we had to do six different rounds of it because the tumour just kept growing” said Mikayla’s mum, Natasha.

Mikayla is one of 5 children, she has one sister and three brothers.  To give the family something to look forward to, post cancer treatments Joss Searchlight funded tickets for the family for a three week holiday in Disney World Florida. It was just the tonic that they all needed and they had an amazing time.

Over the years Mikayla’s brain tumour severely affected her vision and she now has just limited site in her left eye . Although she is now registered blind, Mikayla has the most joyful and incredible spirit and is determined to enjoy life. Prior to the deterioration in her eyesight Mikayla received lessons in learning to read brail, in preparation for total loss of vision. She proudly demonstrated to Dianne Parkes one of the founding trustees of Joss Searchlight how she had learnt to sing as she  touched the brail symbols.

Mikayla has been battling with cancer for over a decade. In 2019 she had a big relapse and received ground breaking proton therapy. 

The most miraculous results were from a recent clinical trial  using drugs known as ‘inhibitors’. These help the body to recognise cancer cells and attack them. Age 14, the scan showed that the inhibitors were working for Mikayla and had reduced the size of the tumour by half. Natasha said “It has been a very long-winded, hard and draining battle”. 

It’s rare for glioma’s  to run in families but having a family history of glioma can double the risk of developing it. The family therefore decided to all be tested for the genetic virus that may develop into cancer. 

At October 2022 Mikayla is still receiving ‘inhibitor’ chemotherapy. Thankfully, she continues to be doing well.  Natasha says “She’s started in Year 11 and is expected to get good results in her GCSE’s.”

#MikaylaFilmMikayla and Mum Natasha talk to Joss Searchlight

Danielle - diagnosed with a brain tumour aged 9

£10

A gift of just £10 could help give support to a family who are struggling with a new diagnosis

£25

A gift of  £25 per month could pay for a days pioneering research into rare brain tumours 

£50

A gift of £50 could fund research into devastating brain tumours in a clinical trial 

DIPG brain tumours are currently an incurable and devastating cancer.

DIPG robs a child of their hearing, sight, movement, the ability to swallow and eventually their breathing. 

It’s only with your help that research into this devastating cancer is possible.

Joss Searchlight are funding vital research into the most life-threatening brain tumours. Please be part of our journey.

FAMILY SUPPORT

Along with providing financial grants to help families struggling with the expenses of having a child with cancer we also provide life changing support.

Support Workers who advise, visit and support families with compassion are an essential part of Joss Searchlight.

Family support is in our DNA, as the founding trustees know what an important part compassionate support played in helping them during their son’s illness and after his sad death.

We can’t fund research and we can’t support families without you. 

FINDING A CURE

At Joss Searchlight we totally depend on donations. Donations enable us to fund vital brain tumour research, to find a cure for some of the rarest brain tumours, to campaign for better treatments and support families on their cancer journey when they need it most.

Research organisations need funding stability, they need to know that they have enough money coming in every month to allow them to do their incredibly important work. We need to pledge a certain amount of funding every year to make sure they’re able to do everything they can to find cures and treatment programmes for some of the hardest-to-treat brain tumours.

Children should enjoy their childhood
Not spend their lives fighting cancer

Help us find a cure for rare brain tumours. Give your support today

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