Follow five-year-old Jago and help raise fund for and awareness of his battle with rare brain tumour DIPG.

Our Instagram heroes in recent weeks have kept us laughing, cooking, informed or inspired through what has been one of the strangest years for the world’s population in living memory. This week, however, our hero genuinely lives up to the accolade. This Instagram account follows five-year-old Jago, an incredibly brave little boy who is battling a rare non-curative brain tumour known as DIPG, and his support team, which consists of his amazing mum, Gabriele, twin sister Imogen and his grandmother.

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Weekend update: Jago, Imogen and Gabriele are now at Omi’s house in Austria. The family made their way from Switzerland via Germany on Tuesday, after Jago’s early discharge from Hospital. Despite a long hot drive, Jago and ‘Mogy were in great spirits, full of energy and raring to build a tree house in Omi’s garden as soon as they “landed” - so that’s been keeping Gabi busy this past few days. Jago meanwhile is still acting like a “Duracell bunny”. ???? He starts his trial drugs in earnest next week and is back in hospital for a check-up on Wednesday. Here is Jago with Imogen and his teacher, on World Book Day, in March. #JagosJourney #DIPG #WorldBookDay #Twins #TwinsOfInstagram #boygirltwins???? #boygirltwins #boygirltwinsrock #boygirltwins????????

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We first brought Jago’s plight to your attention a few weeks ago, when we first learned of his GoFundMe appeal to raise some £450k to secure a place on a clinical trial in Switzerland. With no current trials in the UK, this is his only hope of overcoming the devastating statistics (just two per cent of children diagnosed with DIPG survive beyond five years, with the median survival time being eight months). The hope is that the clinical trial will extend Jago’s life – and, if successful, buy time for research scientists to make greater advances and potentially even save his life.


The good news is that Jago’s GoFundMe appeal has raised £73k and counting, which has enabled Gabriele, Imogen and Jago’s grandmother to travel to Switzerland with Jago for treatment and secure his place on the trial. Via the Instagram feed, which is run by a close friend, the family shares his progress, his astonishing bravery and his dinosaur obsession, which is still much in evidence along with his incredible spirit. The positive feeling that radiates from the family via the grid is really something.


This is however, as the account name makes clear, a journey. The kindness of both friends and strangers has helped them to get Jago this far, but there’s still a long way to travel. We urge you to follow the story of this beautiful little boy and, if you can, donate so that he may get his very best shot at more time and perhaps even a cure. And as well as donating, telling his story and sharing it across social media is paramount for raising the funds so desperately needed. Please help if you are able.

For now, we wish Jago and his family all the love, support, strength and luck in the world. Jago, we’ll be cheering you on from afar; you truly are our hero.

By Nancy Alsop
August 2020

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Nancy Alsop

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