Mum from Morley in Leeds who lost three-year-old son Archie Vaughan to brain tumour tells his story

He was just three years old when he was diagnosed, having been born on Christmas Day in 2017.

In November 2021, he died aged just three years and eleven months.

His mum Hayley Vaughan has described him as being “full of life” and someone who loved to share.

She said: “His older siblings Lily and Harry adored him, he fit straight into the family, he was a breeze.

"He would always play lovely with other children, he loved to share and was full of life.”

However, there came signs that all was not right with Archie, including that he had been holding his head to one side and his sleeping had become irregular.

Eventually, he was diagnosed with a high-grade tumour known as ETMR.

Hayley explained: “The following day, he had the worst meltdown and told me he 'didn't want to go nursery and he has no friends there'. I have so much guilt about the months we thought Archie was just being naughty, when inside his tiny head, the tumour was causing havoc.

“I can still remember the seriousness of her voice. This is when those suspicions were becoming a reality.

“We both cried as we knew we were probably dealing with something devastating.

“Playing in the waiting room, he was only using one arm and hand. Things were moving fast inside his tiny little brain."

After a CT scan, the family were told it was clear but a second look led to the discovery of something on Archie’s brain.

Hayley said: “You just want to scoop them up and keep them safe. It was a very traumatic time, something that will haunt me forever.

“I’ll never forget the matron who took me to one side and said 'Everything is going to be okay’, and hugged me.

“I knew Archie was very unlikely to survive, but after speaking with other ETMR families, we could see it was possible. We had to try.

“I had to carry my heavy, dying three-year-old, who couldn’t stand up unaided and had crazy meltdowns, alone to a ward with children who needed a stitch in their finger. Having to put Archie to sleep alone and watching him be pinned to have a cannula was horrible.”

He eventually underwent a 12-hour surgery, which was successful in removing 95% of his tumour.

Hayley said: “We will always owe the neurosurgeon so much because he gave us precious time. We were told without the surgery Archie would have only survived a few more weeks.

“This made me question that we were going to put him through chemotherapy.”

Archie lost use of an arm after surgery and was left with paralysis down one side of his face.

With chemotherapy no longer a possibility, treatments that were invasive, difficult to organise and would only prolong Archie’s life for a little while longer were suggested.

Hayley said: “After lots of thought and one very scared little three-and-a half-year-old, enough was enough.

"We agreed to enjoy our gorgeous Christmas baby and make memories – no more hospital, no more procedures.”

The local community rallied around the family as they strived to make memories with Archie.

He enjoyed trips to the beach and neighbours organised a street party for Halloween.

Hayley explained: “Friends offered us their caravans and these were the best times. Archie was at his happiest on the beach, and being by the sea helped us forget some of our worries.

“We went all out for Halloween, neighbours rallied round to arrange a street party.

“The nurses that came daily to change Archie's syringe driver were the kindest and most caring of people. Archie made a special bond with the play therapist, she brought him sand and set it up on the living room floor - his own personal beach.

“The house was so calm and strangely felt like a happy place. Although he was so poorly, he was comfortable and we loved him, spoilt him and cared for him.

“We really hoped that Archie would see his fourth birthday on Christmas Day but sadly that didn't happen. He passed away snuggled up in bed with his mummy and daddy on November 7 2021.”

Archie shared a strong bond with older sister Lily and older brother Harry, who were 11 and six respectively when Archie died.

Hayley said: “Lily took his hand and began talking about all the things he had done that had made us smile. I cannot tell you how proud we are of her.

“They both amazed us, the bond they had with Archie was unbreakable.

“We miss him hugely, but we will never forget him and what he has taught us all.”

Archie’s family are now determined to ensure families with ill children are able to make memories in the same way they did.

A charity named ‘Archie’s Caravan’ has been established, which offers families the opportunity to enjoy breaks at Reighton Sands Holiday Park in Filey.

Hayley said: “It’s a special place to let all your worries drift away for a while. We took Archie to see the caravan when he was still with us. He said ‘I love that caravan mummy’.

“Archie’s Caravan has been a huge success. We look forward to welcoming lots more families who will hopefully love it as much as we do.”