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Family of two-year-old with brain tumour supports cancer charity

Arthur Middleton with his family. (3472087)
Arthur Middleton with his family. (3472087)

A family are giving their backing to a cancer charity after their two-year-old son was diagnosed with a rare type of brain tumour last year.

Arthur Middleton was diagnosed with a grade 1 ganglioglioma/astrocytoma brain tumour in July 2017.

Mum Claire said: “Never in a million years did a brain tumour cross my mind as the reason behind our two year old son’s symptoms. His first seizure was 11 weeks before his tennis ball sized brain tumour was discovered.

“We spent almost three months with him being treated for epilepsy and it being assumed that his seizures were related to his prematurity, having been born at 26 weeks.

“His vomiting and nausea was increasing, especially in the mornings, and his seizures were not being controlled by the medication. It was so heartbreaking to see our little boy go from ‘happy go lucky’ to so lethargic and unhappy.”

When they discovered the tumour in 2017, Arthur was transferred to Addenbrookes in Cambridge for his surgery and subsequent oncology care until the family moved to the US in January 2018.

The family, who lived near Grantham at the time of Arthur's diagnosis, are throwing their weight behind HeadSmart, the brain tumour symptom awareness campaign spearheaded by The Brain Tumour Charity, that highlights symptoms such as Arthur’s as possible indicators of a brain tumour.

The campaign has managed to reduce the average diagnosis time from over 13 to just 6.5 weeks. It continues to campaign to increase awareness among GPs and healthcare professionals and to reduce this time even further.

Claire added: “Looking back now, it is hard to believe just how poorly he was. The final straw came when we noticed he very clearly had stopped using his right arm/hand, but still we never thought of a brain tumour being the cause of all of this.

“At this point we fought for an MRI scan at Peterborough Hospital earlier than our original appointment (which would have been 15 weeks after his first seizure) and were shattered when they delivered the news.”

Arthur Middleton (3472434)
Arthur Middleton (3472434)

Arthur continues to receive treatment in North Carolina in America where the family moved for father Henry's job,

Claire and Henry are determined that Arthur’s story helps raise awareness of HeadSmart and the vital work it does to bring down diagnosis times for children and young adults.

“I wish we had seen the HeadSmart campaign earlier. In retrospect, and now knowing the signs, it was so obvious - Arthur was having seizures, nausea/vomiting, loss of balance, unexplained falls and slurred speech. We do wonder whether an earlier diagnosis might have prevented the ongoing right sided weakness that he now has as a result of the tumour.”

“Arthur has now undergone two surgeries but, unfortunately, his grade 1 tumour is stubborn and unusually aggressive and has regrown after both surgeries.

“He’s now currently almost five months into chemotherapy with a further 10 months ahead of him and the very real prospect of needing additional treatments in the future.

“Despite all of this, we feel incredibly lucky that Arthur’s tumour is low grade. He amazes and inspires us every day and tackles every challenge he faces with such strength of character.”

Dr David Jenkinson, The Charity’s Chief Scientific Officer, said: “Brain tumours are the biggest cancer killer of children in the UK. HeadSmart has two aims: to save lives and reduce long-term disability by bringing down childhood brain tumour diagnosis times.

“The campaign will help us to achieve that goal by alerting more healthcare professionals, parents and young people to the signs and symptoms of the disease.

“We are extremely grateful for the support from Claire and her family for sharing Arthur’s story and helping us raise awareness.”

HeadSmart is run as a partnership between The Brain Tumour Charity, The Children’s Brain Tumour Research Centre and the Royal College of Paediatrics and Child Health.

Professor David Walker, co-director of The Children’s Brain Tumour Research Centre, said: “Since developing and launching HeadSmart, we have made real progress, halving the time it takes on average to diagnose a child with a brain tumour across the UK.

“The HeadSmart campaign uses new evidence, justifying a new approach to healthcare professionals, young people and parents of younger children.

“With this revised approach we aim to further accelerate the speed of diagnosis by helping doctors, young people and their families to work better together in selecting those who need a brain scan to diagnose or exclude a brain tumour."

Find out more about brain tumours, their symptoms, the research HeadSmart funds, and how it can help at https://www.headsmart.org.uk/

Over 11,000 people are diagnosed each year with a primary brain tumour, including 500 children and young people – that’s 30 people every day. Less than two per cent of cancer research funding is spent on research into brain tumours, yet brain tumours are the biggest cancer killer of children and adults under 40 in the UK

Spot the symptoms

  • Persistent/recurrent headache
  • Persistent/recurrent vomiting
  • Balance/co-ordination/walking problems
  • Abnormal eye movements
  • Blurred or double vision
  • Behaviour change
  • Fits or seizures
  • Abnormal head position such as wry neck, head tilt or stiff neck
  • Increasing head circumference (crossing centiles)
  • Delayed or arrested puberty

Symptoms vary across age groups. For more information, visit headsmart.org.uk


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