Neon Roberts: Uncle in plea to sister who STILL can"t accept brain-tumour boy needs vital radiotherapy

Put your son before your beliefs: Neon's uncle in plea to sister who STILL can't accept brain-tumour boy needs vital radiotherapy

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UPDATED:

11:24 GMT, 23 December 2012

Fighting on: Sally Roberts, the mother of Neon

Fighting on: Sally Roberts, the mother of Neon

The uncle of seven-year-old Neon Roberts – the boy whose mother Sally has fought a court battle to stop doctors using radiotherapy to treat his brain tumour – has urged her to put her beliefs aside to save her son’s life. And Tony Leese revealed Mrs Roberts’s quest to find ‘alternative’ cures for her son was in part prompted by a doctor’s careless comment that radiotherapy would ‘fry’ her son’s brain. The highly emotive case has pitched Mrs Roberts’s maternal love and instincts against medical science and last week a judge ruled it was the doctors, rather than the mother, who had his best interests at heart.

Yesterday she pledged to ‘sue them all’ and has vowed to fight on.

But her older brother Mr Leese, 48, believes it is time for his ‘headstrong’ sister to abandon her legal fight and listen to the doctors for the sake of his nephew.

Fighting back tears, Mr Leese said: ‘It’s time to put Neon first, and for Sally to put her beliefs aside and accept that there is no alternative therapy to be found out there now.

‘Neon needs radiotherapy to save his life and we have no more time left. Sally must accept the court’s decision and put all her energy into saving Neon and not into further court actions.

‘I supported Sally initially, our whole family did, but in the last week after hearing the court arguments, I realise that we have the best medical team available, we have to let them treat Neon to stop him dying.’

The case has divided opinion across the world with some claiming Mrs Roberts, 37, is misguided while others sharing her view that cancer care in the UK is ‘stuck in a rut’.

The mother is opposed to radiotherapy because of its severe side-effects, which can include reduced IQ, growth problems, infertility and tremors.

During most of the hearings at the High Court in London over the past few weeks, she has had her brother as a constant source of support as lawyers debated whether to over-rule her wishes. Mr Leese, a former builder who is now training to become a social worker, has a three-year-old daughter and understands only too well the powerful instinct to protect a child.

He and Neon are close and regularly play football and computer games together.

Indeed, it was the uncle who was
instrumental in getting Neon’s tumour diagnosed after he noticed the
boy’s eyes wouldn’t focus as he pushed him on a swing. And as the
emotional and physical impact of the past two months take their toll, Mr
Leese appears tired and drawn.

But
while the evidence presented to the court has made Mrs Roberts more
determined to treat Neon with alternative therapies, it has made her
brother more convinced that conventional medicine is the boy’s only
hope.

Neon, seen with his dog Candy

Happy memories: The mother is concerned about the effects certain treatment will have on her son Neon, seen with his dog Candy

Neon Roberts, seen with his parents Sally and Ben, had surgery to remove a brain tumour

Neon Roberts, seen with his parents Sally and Ben, had surgery to remove a brain tumour

When his sister announced that she did not want Neon to have a second operation to remove a new growth, Mr Leese says he became increasingly concerned at her behaviour.

‘She also came into court that day and sacked her legal team,’ he said. ’It was like a double whammy, a complete shock.

‘When I listened to the evidence from the oncologist treating Neon in court, I began to be more convinced that he should have the operation and the treatment they were recommending. /12/22/article-2252332-16A0921C000005DC-213_634x440.jpg” width=”634″ height=”440″ alt=”Concerned uncle: Tony Leese seen with nephew Neon and his daughter Lily” class=”blkBorder” />

Concerned uncle: Tony Leese seen with nephew Neon and his daughter Lily

The boy had complained of headaches during the summer and although their GP assured the family nothing was wrong, Mr Leese noticed a change and ‘nagged’ his sister to take him back to see a doctor.

It was a move which potentially saved Neon’s life as in October he was diagnosed with medullablastoma, a form of brain cancer.

Neon had surgery to remove the tumour the same month. But a doctor told Mrs Roberts that radiotherapy was then necessary because ‘you need to fry the whole brain’.

Mr Leese said: ‘It is a phrase that has haunted our family ever since. We didn’t want little Neon’s brain to be fried, neither did we want him to have any personality change.

‘Neon is an amazing cheeky boy. He
could be anything from an actor to an astronaut, and we didn’t want to
blight his future with radiotherapy if we could avoid it.

‘He
is a great artist and does fantastic drawings, I’d hate to see him lose
that talent. We wanted to have Neon back as Neon.’ Mrs Roberts became
increasingly isolated from the rest of the family and sought advice from
a representative at a charity which investigates alternative cancer
treatments.

Mr Leese went
on: ‘I said to her, “Why are you taking advice from him, he’s not a
doctor, we already have a top medical team, the best of the best.”

Sally Roberts with son Neon who, in October, he was diagnosed with a form of brain cancer

Sally Roberts with son Neon who, in October, he was diagnosed with a form of brain cancer

‘Sally just growled back at me, “What do you know”

‘I felt an overwhelming sense of powerlessness. I realised there was nothing I could do to stop her.’

Mr Leese, who says Neon ‘follows me around like a puppy’, is clearly deeply affected by the illness.

‘I saw him the night before his operation and the night after.

‘I look at him lying in his hospital bed with his angelic blue eyes, looking pale and frail, and I just can’t bear to think that he might die.’ Mrs Roberts got so desperate she went on the run with Neon for three days in early December, fearful that she would be forced to surrender her son for radiotherapy.

She also started court proceedings to block the therapy – without the knowledge of her family.

Mr Leese said: ‘The first we knew about it was when police raided my parents’ house looking for Sally and Neon.

‘I didn’t blame Sally for running off.
I have a daughter and at that stage I would have done the same. Once I
knew about the court case, I went along and when Sally saw me she just
came across and gave me a huge hug.

‘I love Sally and we’ve always been very close since we were children.

‘I’m
her big brother and have always done everything I can to protect her.
This is why it’s hard not to support her now when she most needs it.’

Mr
Leese is not alone. Neon’s maternal grandmother, Bunty Leese, is having
serious doubts as well – particularly after police also raided her home
in North Tawton, Devon. Mr Leese, who lives on the Isle of Dogs in East
London, with his partner Antonia McKnight, 36, and their daughter Lisa
Lily, said: ‘My mother rang me up and said, “How dare Sally put my
grandson’s life at risk I trust in the medical team and Neon might die
if he doesn’t get his treatment.” ’

A drawing by Neon, who is at the centre of his mother's battle to stop him having radiotherapy

A drawing by Neon, who is at the centre of his mother's battle to stop him having radiotherapy

Mrs Roberts’s battle has also threatened to tear apart her relationship with Neon’s father.

‘On Friday night, in front of Neon, Ben said to Sally, “If you want to see Neon at all, you won’t behave like this.”

‘I had to get him away from Neon’s bedside, it’s so bad for Neon to see his parents arguing. He doesn’t know anything about the court battle, but he can tell his parents don’t agree over something.

‘This is an aggressive tumour which needs to be treated. I don’t believe Sally when she says Neon would probably take the same decision as her.

‘What child wants to die Life is like a roller-coaster, and he would be saying, “No, no, don’t stop – I want more.” ’

In court, Mr Leese has appeared increasingly uncomfortable sitting alongside his sister. The space between them on the bench has become wider ever day.

Initially the two would whisper occasionally in court, but last week they sat in virtual silence.

Mr Leese is afraid that this terrible battle could tear the whole family apart.

‘I know what I’m saying will hurt her. I don’t think she’s mad – she’s just a mother who is trying to do her best for her child. But she has to listen to the court now.

‘We all need as a family to gather round Neon and give him our love.

‘That will have more of a healing power than any of Sally’s alternative treatments.’

Last night Mrs Roberts declined to comment.

VIDEO Relief for Neon Roberts' father as court rules against Sally

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