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About Charlie

Brave. Kind. Caring. Selfless. Funny. Superhero.

 

Just a handful of the many inspiring words to describe Charlie. He was truly one of a kind. Born in Emmer Green near Reading, it was in March 2015 when Charlie was just 8 years old when he was diagnosed with medulloblastoma, the most high-grade brain tumour found in children, following weeks of unexplained vomiting and neck pain. He endured emergency surgery to remove the tumour and went through several rounds of chemotherapy and stem cell transplants. Following treatment, he went into remission in 2015, but in March 2018 the cancer returned after a routine scan picked up five tumours on his spine. 

Refusing to give up and after tirelessly researching online, Charlie’s mother, Toni, discovered a treatment involving a targeted radiotherapy called CyberKnife combined with the drug Avastin, which destroys the blood supply to tumours, and other chemo drugs. Although CyberKnife is available in the UK on the NHS, she was told by Charlie’s local hospital that he failed to meet the criteria as he was a relapse patient, in line with the current policy. It is also available privately, at a cost of over £30,000, so Toni contacted various private hospitals in the UK asking if they treated children, to which no one replied. 

There was no time to spare, and no other possible option. His story was shared as part of Channel 4's Stand Up To Cancer campaign. Fervent fundraising meant Charlie was able to receive the CyberKnife treatment in Ankara, Turkey, at a cost of £80,000. He first flew out in August 2018 to start what would be several trips to receive radiotherapy and chemo. The effects were pretty horrendous, but in March 2019, he completed his treatment and came home. A subsequent scan gave him the all clear. 

 

Not once during the years he was sick did Toni hear him ever complain.

In November 2019, a routine scan showed that the cancer had returned for a third time. The NHS told Toni that he wouldn't see Christmas. A major appeal was launched on his Facebook page and in local press to fund urgent life-saving immunotherapy treatment in Germany, where almost £100,000 poured in from people from the community, nationally and overseas in a matter of days. The generosity and kindness was utterly overwhelming - Charlie always brought out the best in people. But in early 2020 the pandemic meant treatment was abruptly halted. Forced into self-isolation with Charlie, Toni was undeterred. She couldn't just do nothing. After further extensive research and weeks of many doors closing in her face, Charlie was accepted on a trial to receive ground-breaking immunotherapy in Mexico. She wasn't going to let lockdown get in the way of anything. A major airline reached out to personally fly Charlie and his family to Mexico City, which was to be the first of three trips. 

 

On the evening of 12th December 2020, Charlie's plane touched down at Heathrow. Heartbreakingly, he never made it home. He was taken straight to the Royal Berkshire Hospital after suddenly becoming paralysed. He was diagnosed with hydrocephalus, a condition in which an accumulation of cerebrospinal fluid occurs within the brain. In short, the tumours in his spine had blocked his spinal fluid, creating a fatal build-up in his brain.

 

His family, including dad Mark and older siblings Oli and Jess, were all with him when he lost his fight. He was told how much he was loved. His last words to Toni were "I'm sorry". Typical Charlie. Always caring about others than himself, during the times he was ill and even at the very end of his life. She told him that she'd look after his two dogs Eric and Ernie, and his XBox, so he could just go to sleep. That he did.

He was just 13 years old.

In the summer of 2021, as a means of keeping busy and managing her unimaginable grief, Toni set up Charlie's Dog Place in her boy's honour, a dog boarding and walking business. Charlie adored dogs and on his last days in Mexico, he told Toni that when he grew up, he wanted to look after dogs. She only felt it right to carry out his dream for him. She moved the business to a bigger premises in Sonning Common a few months later to cope with demand. The demand hasn't dropped off  - she is flat out and usually fully booked. This is a testament to her resilience and tenacity and of course, to Charlie. Everyone loved him.

We have set up the charity Team Charlie to help support families in a small way who are experiencing tough times with their own child battling a brain tumour. Toni is only acutely aware of how much it meant to have the support she received from various charities when she struggled to make ends meet while transporting Charlie to countless medical appointments and looking after him in his time of need. Whether to pay for fuel costs or offer some respite with a short family break away, she fully appreciates the difference it can make and wanted to give something back.

 

We're all living in such difficult economic times, so imagine the impact on families when a parent is unable to work to become their child's carer or there are medical, travel and living costs to cover - let alone dealing with the stress of  the illness itself.

 

Toni believes Charlie would love to know he is helping others and making a positive difference. 

This one's for you, brave champ.

We'll ensure your impact on the world remains a lasting one.

 

#teamcharlie #charlieforever

"A small act of kindness can change the world"

Our Mission

Our Mission

We're a charity committed to serving Charlie’s memory by offering respite through grant giving to courageous children battling brain tumours.

Charlie Ilsley with parents Toni and Mark during his hospital treatment.jpg

We Need Your Support Today!
Help us put a smile on the face of a child living with a brain tumour by donating towards a grant to offer some respite from the tough, often heartbreaking daily ordeal of battling such a relentless, evil disease.
Whatever you can give will make a difference to the lives of children and their families.
#forcharlie

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