How boy who lost life to rare cancer is helping other children

"This journey will either destroy you or you will change the world."

For the parents of Charlie Robinson, a "remarkable" little boy who died of an aggressive brain tumour aged just five, the latter seemed unattainable in the early days after his death.

But five years since the death of their 'happy' son, Nici and John Robinson, have raised more than £60,000 for Alder Hey Children's Hospital and have sent more than 90 families on cancer respite breaks.

Charlie's battle with Grade 3 ependymoma began in 2018 when the then two-year-old developed unusual symptoms.

Ependymoma is a rare type of brain tumour which starts from ependymal cells - the fluid filled areas of the brain and the spinal cord. Signs of ependymomas depend on whether the tumour is in the brain or the spinal cord but common symptoms include headaches and feeling or being sick.

Previously a "smiley" child, with lots of friends, Charlie began to suffer with persistent headaches and vomiting and he gradually started to withdraw from activities he used to enjoy.

"At first we were told things like 'there's a stomach bug going round' or 'he's dehydrated', but something didn't add up," said his mum Nici. "He never had a temperature and sometimes he would have a headache before he threw up.

"Over four months, my happy, bubbly little boy became a shadow of himself."

After failing to get a diagnosis upon initial inspection, Nici and John took him from their Lancashire home to Manchester Children's Hospital, where he was diagnosed in four hours.

It was at this point that the family's three-year battle to save Charlie's life began, starting with his first operation in Manchester in June 2018.

Nici and John, who are also parents to sons Jack, 12, Harry, eight, and daughter Libby, two, were told that the operation had not gone well and they decided to pursue proton beam therapy, an advanced form of radiotherapy, in Germany.

The rural community surrounding their small village of Inskip, raised more than £100,000 in three days, leaving the couple "buzzing" and hopeful for the future.

However, shortly after, they were told that chemotherapy and possible surgery to remove the entire tumour would be preferable.

"We had to do whatever was best for him," added the mum-of-four. "But we could see he was deteriorating. We had a scan and it confirmed that he was terminal."

Weeks later the family were given a second chance in the form of Prof Connor Mallucci, a consultant paediatric neurosurgeon at Alder Hey Children's Hospital, who offered to take another look.

"He said 'I have never lost a child on that table' and that he wouldn't now" 41-year-old Nici added. "Charlie was in surgery for 14 hours and he managed to remove the tumour."

A scan later revealed that there was some remaining and a second surgery was scheduled.

She added: "He had to learn to walk again and talk again. Everything had changed. But you're so grateful that you still have your child.

"I convinced myself he would recover fully. He was so positive. He loved seeing the nurses. He never complained or queried anything.

"He was still absolutely amazing, we adored every little bit of him, but he was never really the same."

Charlie underwent proton beam therapy, a round of chemotherapy and then a fourth and final surgery. Following this, his tumour disappeared for 14 months.

But in February 2021, the family were given the news that the cancer was back.

"We went from a clear scan to 12 anomalies, that's when we knew it was terminal," said John.

Charlie died less than six weeks later on April 7, 2021.

"You lose your purpose when you lose a child," said Nici. "There is nothing worse that can happen. John and I both knew we were going to set up a charity to support any family in this position."

Their charity ThumbsupforCharlie can offer respite for any family in the UK with a child under 25 living with a brain tumour or those with a child who has died of a brain tumour.

"We know that with treatment you feel like you can't think about anything else," said Nici, a former NHS therapist. "Respite is invaluable, you can get away from it without any guilt and make memories."

On top of this, they have raised £60,000 for Alder Hey Children's Charity to help fund a new CT scanner and ongoing research into treatment options.

The family said that without Prof Mallucci, they would have had three fewer years with Charlie.

Each year, Great Eccleston rallies in the little boy's memory to put on Charlie's Convoy, a day-event which includes a convoy of more than 300 vehicles including lorries and tractors.

The event, which started during lockdown for the NHS, continued after Charlie's death and has grown each year.

Looking to the future, Nici and John hope to continue growing their son's legacy.

In addition to their charity work, Nici has launched a business named Blue Bear and Co, which receives financial donations from businesses to create keepsake bears for needy recipients.

Some of the bears, which have a heartbeat and voice recording, have so far been donated to Derian House Children's Hospice in Chorley, the Alder Centre in Merseyside and East Lancashire Hospice in Blackburn.

"They can't take away the pain, but they can offer comfort and connection," she added. "It's about memory making and something you can hold on to."

"As soon as we lost Charlie, a week later our mobility car was taken and all of the equipment too," added John. "You're left in a quiet, empty space with no one to talk to.

"We want people to know we are here so they can access us when they need us."

Listen to the best of BBC Radio Lancashire on Sounds and follow BBC Lancashire on Facebook, X and Instagram. You can also send story ideas via Whatsapp to 0808 100 2230.