Rutland boy with brain tumour could be first ever child to receive new treatment

His family are raising as much money as possible so that he can do all his favourite things in the meantime

Author: Ellis MaddisonPublished 14th Jun 2022

There's hopes that ground-breaking new treatment in America will help a boy from Rutland with an incurable brain tumour.

10-year-old Lucas Posey-Bottomley, from Oakham, was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) - a rare form of cancer affecting 20-30 children in the UK annually.

There's no known cure in the UK and, while radiotherapy helps alleviate symptoms, no child has ever survived the condition.

Lucas was referred to Leicester Royal Infirmary A&E Department after several visits to the GP

His father, Jamie Bottomley, told us how his life changed in an instant when hearing of his son's illness:

'It's hard to comprehend that there's nothing you can do and just accept that your son's going to die. He's my only child, my ex-partner Kym, she's got two other sons but for me, Lucas is my world. I love him to bits and I'd do anything for him.'

'I spent nearly two weeks solid reading everything I could find on the internet about it (DIPG), just trying everything I can to at least slow the progress of the tumour before the radiotherapy started, you could just see how quickly he was going down hill.'

Not giving up hope

After setting up a GoFundMe page so that Lucas could enjoy all his favourite things while he still can, Lucas' father was contacted by an American company named SonALAsense.

Lucas with his mum, Kym Posey, on his 10th birthday

SonALAsense are trailing a non-invasive drug-device combination therapy using tumour targeting and ultrasounds, with a specific focus on treating Lucas' condition.

To date, a small number of adults have benefitted from the ground-breaking treatment - which Lucas would be the first child in the world to undergo.

There's an alternative option of palliative care treatment on trial in Germany and the USA that's also not available in the UK, with consultation fee costs and an extra £4,000 ongoing monthly drug cost.

'All I could try at the time was just to do what I could to slow it down with various things that I've read about.'

'I don't know how much that has really helped him but now he's had the radiotherapy, we're hoping that it's going to help shrink the tumour so that now we can look at all the options we've been given', Jamie said.

Over £30,000 has already been raised of a £100,000 goal, which would help cover the costs of the pilot treatment and see that Lucas could do his favourite things while he still can, like go to Disneyland and Legoland.

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