Jake started feeling unwell in December 2021 where he randomly started being sick, it happened a few times every now & then, & in February 2022 after tests, the Dr gave Jake the all clear. 

Jake then started being sick more regularly & was put on the waiting list to see a Paediatric Dr.  In May, Jake started getting headaches nearly every morning, they got progressively worse, so Jake went to A&E where eventually after negative tests he had a CT scan.  

It was the news every parent dreads, they found a mass on Jake's brain, and he was sent straight to Kings College Hospital in London.  Jake was hospitalised for a week, & after a biopsy, returned home.   The family hoped for the best.

However, the results showed a rare brain tumour called Diffuse Midline Glioma, & Jake had to immediately attend the Royal Marsden in Sutton to start the process of medication after scans and observation.  Jake began Radiotherapy and Chemotherapy on 27th June, for 6 weeks, the family travelling from Eastbourne to London daily.  He has continued to receive treatment on a weekly basis since then.

Jake had an MRI Scan on 11th January 2023 to see how the treatment was going.  Initial signs were positive; the brain tumour was shrinking!  However, despite the treatment, Jake has developed a 2nd tumour & the treatment for the initial tumour has now stopped working.  

This news was devastating for all the family, & particularly for Jake.  Jake is just like any other teenager, he is the eldest of 5, and through all his treatment and illness he has remained positive, continuing to go to school, studying for his GCSE's, & talking about his future.  This latest diagnosis has hit him hard & the family has rallied round to support him.

There are very few options for brain cancer treatment in the UK.  Research into brain cancers receives less than 5% of all cancer funding.  Due to the position of the tumour, the body's own defences stop the treatment from effectively getting through to the tumour, unless targeted treatment is used, which is not available in the UK.

Our options are other Chemotherapy in the UK, which has severe side effects- other cancers forming.   Or there are successful stories of a drug called ONC201 in France.   It is around £3500 per month just for the medication (we were originally quoted £2000).  We are trying to raise funds for treatment, travel & accommodation in France. We have had our first visit to France and they have said all the time the treatment works, they will keep Jake on the medication. He will be reviewed in a year as long as scans have shown improvement.

Jake has been incredibly brave & positive throughout his diagnosis & his gruelling treatment schedule.  Please help us to raise funds to send him to France for lifesaving treatment.

Thank you for reading.

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