It’s worst news any parent could get.. but we found a way to give our precious son a real fighting chance. We look at him now, playing squash and winning awards, and we are so proud. But, most of all, we have hope
FAMILY REVEAL HOW CHARITY’S PIONEERING BRAIN TUMOUR TREATMENT HAS GIVEN 11-YEAR-OLD NEW LEASE OF LIFE
Watching as their triplets dash about the squash court, Camron and Suzan Malik can’t help but smile – because just a year ago they were told one of the boys had only nine months to live.
The couple suspected things weren’t quite right with their squash champion son Sumner last July when he started to miss the ball but their GP put it down to a virus.
As the weeks passed and the 11-year- old’s game and health deteriorated, his mum and dad decided to take him to A&E, where scans revealed he had a brain tumour.
Last September, after more tests, Camron and Suzan were given the news all parents dread – their son’s tumour was inoperable. They were told he probably had just nine months to live.
That was 13 months ago and, not only is Sumner still here, he is back playing squash with his four brothers and sister thanks to pioneering treatment made possible by Scottish charity Funding Neuro.
The treatment, which involves injecting drugs directly into Sumner’s brain, has not only prolonged the schoolboy’s life. It has given his family and others like them hope.
Businessman Camron, 50, of London, said: “It’s been 13 months since we got the news no parent ever wants to hear – that our child has a terminal illness.
“After Sumner was diagnosed with DIPG (diffuse intrinsic pontine glioma), doctors told us he had nine months tops and the best thing for us to do was take him home and make memories.
“Even though we were told there is no known cure for our son’s rare and terminal brain tumour, we were determined not to give up on him and started researching alternative treatments available outside the NHS.”
Camron, who is also dad to Bailey and Heston, both 11, Curtis, 18, Perry, 16, and Torrie, 13, added: “It was then that we discovered the work of neurosurgeon Professor Steven Gill, of the Bristol Royal Hospital for Children.
“He uses revolutionary technology called convection enhanced delivery (CED), which delivers drugs directly to the tumour using
micro-catheters – tiny tubes – placed surgically into the brain. This method bypasses the membrane ‘wall’ known as the blood d- brain barrier, which stops intravenous drugs passing from the bloodstream.
“On average, a child diagnosed with DIPG lives for just nine months but results showed that children receiving CED treatment were living at least twice that long. We had to give our precious son that fighting chance."
After seven infusions, Sumner’s tumour had shrunk by 20 per cent. Last week, after his 10th treatment, scans showed that the cancer is continuing to get smaller.
Camron, who runs a small family business with Suzan, 47, is delighted with Sumner's progress but knows that, even with treatment the long-term prognosis isn’t great.
He said: “We are now at the 13-month mark and Sumner is still with us and his tumour is shrinking. The treatment has given us all hope – and that hope keeps us going.
“Last month the triplets started secondary school, which was a milestone we feared we would never see.
“And a few weeks ago Sumner won player of the year at his local squash club. At one point we felt sure he would never hold a racquet
again and there he was winning an award. We are so proud of our son. He is brave, compassionate, loving and takes everything in his stride with a huge smile on his face.
“He has no idea how grave the situation is, nor do the other two triplets.
“Our three older children are aware of what is happening and they have been a tower of strength to Sumner and us.
“We are aware that no child has ever survived DIPG but we are a strong and positive family and are doing everything we can to give our boy the best chance.”
He added: “Financially, it has been a real struggle as each of the infusions costs £ 6000 and Sumner needs one every four weeks to keep the tumour at bay. The initial operation to insert the port into his skull through which the drugs are administered cost £ 86,000.
“Hopefully in the future, if clinical trials show the success of the treatment, it will become available on the NHS. But for us that is too far away and we are surviving through fundraising and donations.
“We don’t know what lies ahead but in the meantime we, like the 40 other parents in the UK whose children are diagnosed with DIPG, are holding on to every hope.” Glasgow-based charity Funding Neuro are hoping to begin the clinical trial into Sumner’s revolutionary treatment very soon, which will be welcomed by sufferers around the world.
Founded five years ago by patent lawyer Bryn Williams after his own diagnosis with Parkinson’s at 36, the charity seed-funded a major ongoing Parkinson’s clinical trial using the CED technique.
While carrying out the trial, the charity realised the new technolog y’s potential to revolutionise the treatment of other neurological disorders, including DIPG, motor neurone di sease and Alzheimer’s.
Camron said: “Without Funding Neuro, Sumner’s treatment would never have become available so we owe the fact our son is still here to the existence and dedication of this incredible charity.”
Human rights lawyer Aamer Anwar has become a patron of the charity.
He said: “Funding Neuro are passionate about making a difference to the lives of people suffering from these fatal and debilitating diseases. They are challenging the usual processes that take so long to get treatments from the lab and into patients.
“Their work with DIPG, a condition that has seen no advances in more than 40 years, has meant that children who were given a death sentence now have hope and a chance of life.”
Sharon Kane, chief executive of Funding Neuro, said: “We are delighted that Aamer has chosen to support us. I know that with his determination and support we will be able to overcome the challenges we face, accelerate the cures and deliver new treatments.
“Funding Neuro was created to address the gap between these exciting advances in medicine and the poor prognosis faced by many children and adults diagnosed with brain conditions each year.
“The next piece of the jigsaw is for us to create a dedicated centre to offer these new treatments.
“It would be a cruel irony if we were able to create highly impactful and potentially even life-saving treatments but they remain at a purely laboratory-bound level, depriving those most in need of hope of the procedures they need.”
Kids who were given a death sentence now have hope and a chance of life
MAKING A RACKET Sumner with
h Bailey, left, and Heston, right SPECIAL BOND Sumner with his mum Suzan and dad Camron. Right, recovering in hospital and, above, diagram of his treatment
CHAMPION Sumner won player of the year at his squash club Pictures Jim Bennett