Parents keep 12yo son’s terminal brain tumour a secret from him to live normal life

  • Adam Lewis lived for 12 months after his terminal diagnosis last year
  • His parents did not tell him so he could live a happy, normal life
  • After suffering a fit he was diagnosed with a terminal brain tumour
  • He went to school when he could and enjoyed a helicopter ride and abseiling
  • He knew he had the tumour, undergoing radiotherapy and chemotherapy, but not the severity of the diagnosis
  • Sister Chloe Netherton said he was ‘the silliest, bravest boy’ she knew

By
Alex Ward

07:58 EST, 24 July 2012

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18:46 EST, 24 July 2012

The parents of a 12-year-old boy made the heartbreaking decision not to tell their son he was dying so he could live the remainder of his life normally.

Adam Lewis was diagnosed with a brain tumour in April last year after an eight-hour biopsy.

When his family were told that the diagnosis was terminal about six weeks later, his parents Kevin Lewis and Kim Horner opted not to tell Adam so he could carry on living a normal, happy life for as long as possible.

Unaware but happy: Adam Lewis, pictured on holiday in 2010, was unaware he was dying because his parents wanted him to live a happy, normal life

Unaware but happy: Adam Lewis, pictured on holiday in 2010, was unaware he was dying because his parents wanted him to live a happy, normal life

Protective family: Mother Kim Horner (left) did not tell Adam (centre) about his terminal diagnosis so he could enjoy the time he had left with brother Luke (right) and councillor Lynne Barnett (centre back)

Protective family: Mother Kim Horner (left) did not tell Adam (centre) about his terminal diagnosis so he could enjoy the time he had left with brother Luke (right) and councillor Lynne Barnett (centre back)

Adam lived for 12 months after the diagnosis unaware of his fate, undergoing numerous bouts of radiotherapy and chemotherapy.

An avid Batman fan, he was always smiling and continued to go to school when he could until his death on May 3 at Sheffield Children’s Hospital.

Adam, who divided his time living with his mother in Deckham, Gateshead, and father in Barton, near Hull, went abseiling, flew in a helicopter and met a speedway team after his diagnosis thanks to his family and Bluebell Wood Children’s Hospice in Sheffield.

His devastated sister Chloe Netherton, 21, spoke on behalf of the family about their decision to keep his terminal diagnosis from him.

She said: ‘As a family, we made the decision not to tell him it was terminal. 

family snaps

Adam

Family photos: Adam showed his cheeky side on holiday in 2010 (left) and although the steroids he took for treatment made him put on weight, he still enjoyed activities such as a helicopter ride (right) after his diagnosis

‘He was still going to school and having a normal life and we wanted that to continue for as long as possible.

‘He knew he had a brain tumour and that he would have to undergo chemo and radiotherapy to keep it at bay.

‘He also had steroids, which made him pile a load of weight on but through all the treatment, he smiled all the way through. 

‘He was the funniest, silliest, bravest boy I have ever known.’

Ms Netherton, who lives with her fiancée
John Wilkinson and two-year-old son Charlie in Deckham, said her
brother had been staying with her in early 2011 when he first fell ill
after suffering a fit.

They will remember: Brother Luke, sister Ms Netherton, her son Charlie and fiancée John Wilkinson (left to right) will always love and miss Adam, Ms Netherton said

They will remember: (Left to right) Brother Luke, sister Chloe, her son Charlie and fiancée John Wilkinson ‘will always love and miss Adam’

She said: ‘I rang 999 and he was taken to hospital and checked out. He went downhill from there really. He was feeling really unwell.

‘The doctors carried out tests and realised one of his eyes wasn’t responsive.

‘They then discovered the brain tumour and it was pressing so hard on his eye that it wasn’t responding.

Ms Netherton was in disbelief when she heard Adam’s diagnosis.

She said: ‘I remember being at work and waiting for the call to tell me the results.

‘I just remember screaming out and other members of staff coming in to see what had happened. I couldn’t believe it.

‘My baby brother, the boy who slept in my bed because he loved his cuddles, the boy who was so smiley and cheeky, was getting his life taken away from him.’

When the hospital called to tell her that Adam was losing his battle against the tumour she said the family been waiting for the phone call.

She said: ‘We knew it would be coming one day and when it did, we jumped in the car and drove as fast as we could to the hospital.

‘I know it sounds cliched, but he hung on until we got there. 

‘We all got the chance to say our goodbyes and then he passed away on May 3.

‘I was so proud to say he was my baby brother. I adored him like he was my own baby. He brought so much joy to our family.

‘I love and miss him so much and always will.’

Here’s what other readers have said. Why not add your thoughts,
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I don’t think any child should be told that they are going to die,his family made the correct decision may that lovely boy rest in peace , and may his family gain comfort from the memories they have of him.

This was one amazing way to raise a middle finger to cancer. It may have taken his life, but it wasn’t allowed to take his spirit for the time he had left. After losing my dad to cancer, my heart goes out to anyone who has this disease. It doesn’t just harm the person with it, cancer tears familes to shreds, the costs, the drugs, the side effects, the knowing you are going to die if it is terminal like my dad’s was. This little smiler will be looking down on his loved ones from heaven, and he will be very thankful that cancer wasn’t allowed to steal the last precious weeks of his life.

My beloved dad died of cancer last year and if there was a way he could have been ignorant of the fact it was terminal I would have wanted him not to know! Sometimes ignorance is bliss as it became a sentence and my dad loved life. This family are a wonderfully loving family and my heart goes out to them. Rest in peace little one!

Although he was not told he was dying, I wonder if he knew… but was protecting his loved ones from that fact. Sometimes the truth is too difficult to acknowedge and so individuals who are dying attempt to protect their loved ones by pretending that they do not know the truth… difficult.

What a very sad story, made me cry, its not fair children should die before their parents, its not right! R.I.P lil smiler!

More cheerful stories, can you include some feel good stories DM, the news is getting more depressing

kids arent daft, he probably knew but found it easier not to say he knew.

Truly heartbreaking . He lived life to the full and I think they did the right thing not telling him ( how could he or anyone for that matter prepare for
this ). Crikey life is so precious bless all of his family xxx

He was young and i think it was the right thing to do. He had a last happy twelve months not burdened with the fear of death and his family were very brave to be able to carry their decision through.

Tragic . RIP brave man!!! X

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