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The Founding Trustees Story

“When our four year old son was diagnosed with a terminal cancer we were not only devastated but also really confused. 

After we had left the hospital with our very poorly little boy we didn’t know where to turn for help, support and guidance. It was like being completely lost in the dark, not knowing which way to turn.

Joss’ brain tumour was untreatable because of where it was (DIPG) so unfortunately the only course of treatment that he could have was steroids.

We wanted to do everything we could for our son. Not only did we want to give him the best time ever and indulge his every whim, we also wanted to make sure that we hadn’t left any stone unturned as far as any treatments.

We considered even the whackiest of therapies because as parents we needed to do everything we could. Eventually with the help of friends, complimentary therapists, a fair degree of luck and prayer we managed to maintain Joss’s health for nearly six years. This allowed us the precious time we needed to ‘spoil him rotten.” Dianne Parkes

Joss Parkes in Southwold


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

Something About Joss
by Nigel Parkes and Dianne Parkes

Joss was diagnosed with his cancer in 2005 . He was given just weeks to live. To quote the consultant ‘Its’s Disneyland Time’. So we packed our bags, hopped on a train and indulged his every whim. Of course there was a lot more to it than that. There were tears, arguments, fights and large glasses of scotch.

‘Something about Joss’ is the journal that my wife and I kept  over the years that Joss had his cancer. 

When we approached publishers with our book they were very positive, however they wanted the book to have a conclusion – a finality if you like. At the time of writing that was an impossible thought as Joss was still alive but not cured, so we didn’t pursue the publishing option. Now that things have changed we may one day revisit the whole idea.

Meanwhile Extracts from our book is exactly that – extracts that we hope you may enjoy.

Joss Parkes playing the Drums

Despite not being able to fully use his left arm Joss was an amazing drummer and was a music fanatic.

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