Mother fights for son’s life after NHS denies him treatment that saved Ashya King

Evening Standard

By Ross Lydall | September 2, 2015

Donna Henry was informed that 12-year-old Rashard would not benefit from the type of radiotherapy that helped five-year-old Ashya King when his parents took him abroad last year.

Ashya, who was the subject of  an international hunt after being removed from hospital in the UK, is reported to be in remission following treatment in Prague that was eventually paid for by the NHS. Normally children requiring proton therapy are sent to the US or Switzerland, at an average cost of £77,600.

Rashard, who lives in Wandsworth with his sister and two brothers,  was diagnosed with a rare DIPG (diffuse intrinsic pontine glioma) tumour in July last year and had radiotherapy.

He went into remission but an MRI scan last month showed that the cancer had returned.

His doctors say the tumour is now showing “unequivocal signs of progression”. It is re- garded as inoperable due to its position in the brain stem.

His oncologists at the Royal Marsden Hospital in Sutton applied to NHS England for him to receive proton therapy abroad as an exceptional case but the bid was rejected.

Ms Henry, an education coordinator, is now fund-raising in a bid to pay for a course of treatment after believing that Rashard’s case had got “lost in the NHS system”.

“I feel they are telling me to give  up on my child,” she said. “They are jumping to a conclusion that Rashard isn’t going to live that long. I want to know what I must do to fight for my son’s life. I don’t think they’ve gone out of their way to help. They just want me to accept the palliative treatment they’re offering.”

Rashard’s tumour was diagnosed after opticians at Boots raised the alarm when he sought their help for a squint. The boy, who dreams of being a professional tennis player, was referred to Moorfields eye hospital and St George’s  in Tooting.

His mother is frustrated at the lack of treatment options as he has not yet displayed any symptoms of his condition worsening. Unlike conventional radiotherapy, the proton beam stops once it hits the cancerous cells, resulting in less damage to healthy tissue and making it invaluable in treating areas such as the brain.

The NHS’s first proton therapy units are being built at University College London Hospital and in Manchester at a cost of £135 million each but are not due to open until 2018.

Doctors at the Marsden have written to specialists in Jacksonville, Florida, to check whether they would be willing to treat Rashard.

A Royal Marsden spokesman said: “The patient’s case was reviewed by the independent NHS England Proton Overseas Programme but his tumour type does not fall within the current criteria for referral.

“Doctors at the Royal Marsden are continuing to support the patient and his family to find other suitable treatments for him and provide other cancer centres abroad with information about his condition.”

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