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‘Be Bald – Be Proud’
Mikayla’s Story

“Be Bald Be Proud!”
Mikayla’s amazing motto.

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 Mikayla  told us that she 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 communication about her issues.

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

Mikayla is an incredibly brave girl.

She’s started in Year 11 and is expected to get good results in her GCSE’s

Mikayla is one of 5 children (one sister and three brothers) and her illness has had a big impact on family life. 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 as she only has limited site in her left eye. She is now registered blind. However, 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 Joss Searchlight how she had learnt to sing as she  touched the brail symbols.

Mikayla has been battling with cancer for over a decade. She had a big relapse in 2019 and received 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 and had reduced the size of the tumour by half. Natasha said “It has been a very long-winded, hard and draining battle”. 

Having a family history of glioma can double the risk

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. Read more of Mikayla’s story – Genetic testing

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.”

Mikayla with her Mum Natasha

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