Just before Easter, Gabriele Jones notice that her five-year-old son, Jago, was having trouble looking at her straight and that had become a little clumsier. Imagining he might have a problem with his eyesight, they took him to the eye clinic. His eyes transpired to be fine. Sent instead for an investigative MRI scan, on 16 May the family received the devastating news that Jago has a rare and inoperable, non-curative brain tumour, known as DIPG. As Gabriele writes on the family’s Go Fund Me page, ‘There are medical trials: a few in Europe but zero in the UK, and with none expected in the short term. Most trials take place in the US and are performed privately and hugely expensive. Selecting a trial that could extend your child’s life is a hard decision to make. I’ve spoken with some amazing doctors along this journey so far – those with real heart and soul, who are willing to support Jago in any way possible. I truly believe the lab researchers and treating physicians do an amazing job in searching for a cure.’

Jago

The family is raising funds to get to Switzerland for a clinical trial using a drug, developed by Oncoceutics, which has a ‘high potency compared to the next best drug on the market’. With the price starting at £450k, they need every bit of help they can get. Please do consider supporting this cause and helping Jago to receive the treatment he needs. Do read Gabriele’s longer statement and donate here. Relying on the kindness of strangers is not an easy place to be, but it can be an affirming one. Please let’s show this family – which includes Jago’s twin sister Imogen – our deep reserves of humanity.

Since learning of Jago’s plight, we have looked a little further into DIPG. In the course of our researches, we have discovered another little boy battling the same shattering disease (there are only 40 cases diagnosed annually in the UK, hence the relative lack of knowledge about the condition). You can find eight-year-old Kyle’s Go Fund Me page here and help him and his family reach America for another clinical trial that could help him defy his devastating prognosis of 12 months to live. Let’s do all that we can. We wish both families love and luck.

By Nancy Alsop
June 2020

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