Archie's Army fundraising campaign launched to pay for life-saving treatment for Morley toddler fighting a brain tumour
Former footballers and TV presenters have sent well wishes to a little boy from Leeds who has under-gone potentially life-saving surgery.
A month ago, three-year-old Archie Vaughan was a normal toddler going to nursery and playing with his brother and sister.
Last night (Thursday) he underwent last minute surgery, in an operation lasting several hours, to try and remove a tumour from his brain stem in a procedure that is not often performed in the UK.
It has been a nightmare four weeks for his parents, Hayley and Craig, and his older siblings, Lily, aged 10 and Harry, aged six, after discovering on June 14 that Archie had a brain tumour. Heartbreakingly, after further tests and hospital visits, they were told just three weeks ago, that due to the aggressive nature of the tumour and the position of it - the only way forward was palliative care and radiotherapy to make Archie's last weeks more comfortable.
Last month his parents noticed he had a slight head tilt and was wobbly on his feet and already his condition has detiorated to the point where he has now more or less lost the use of his right hand, the right hand side of his face is showing some facial weakness and his little smile is starting to fade.
Although he wants to play as normal, the effects of the tumour are making it impossible and he woke up one morning and told Hayley: "I just want to be proper again, I don’t like being wobbly."
Hayley said she knew "deep-down" it was bad news and, after telling family and friends to prepare for the inevitable, the five-strong family from Morley, plus Bella the Beagle, started making memories with the time they had left and pulled a planned trip to Centre Parcs forward.
She said: "At the beginning of June we noticed he had a head tilt and a few other people mentioned it. I kind of knew deep down. I googled it, you don't want to google it, but I think I knew already and prepared myself for it."
However, the day before they were due to go, they were thrown a life-line.
The tumour type was found to be an Embryonal Tumor with Multilayered Rosettes (ETMR) on Archie’s brain stem. It is rare and occurs mostly in children and surgery is not advisable because the growth is on the part of the brain and nervous system that controls breathing and swallowing.
Hayley said: "The tumour is in a really bad place and we were told they will not be able to do anything for him and it will be treatment to give him more time and make him feel more comfortable. We wanted to start making memories so went away and pulled Centre Parcs forward. The day before we went the LGI called us back and said it was a different type of tumour with a better outlook, but it is still not great."
Plans were made for chemotherapy with the hope it would shrink the tumour and make surgery a possibility down the line. But, as the Vaughans set about research of ETMR they made contact with a family whose child had been operated on for the same condition and is continuing to recover well. On July 4 they emailed the surgeon, Conor Mallucci at Alder Hey Children's Hospital in Liverpool, and within four days a meeting had been arranged where he agreed to operate on Archie without the chemotherapy.
Hayley said: "It has been an absolute nightmare, but when you live it, you have to deal with it and make the best of it. We have got other children and have tried to keep things normal and do fun things and not let Archie know that we are upset, we don't want him to know."
Following Archie's operation, the next course of treatment, which is Proton Beam Therapy (PBT) to obliterate any remaining microscopic cancer cells and for maintenance chemotherapy, is not guaranteed to be available on the NHS or even in the UK so a fundraising campaign has been launched by friends and family under the banner 'Archie's Army'.
The procedure can cost between £150,000 and £200,000 and so far the GOFundMe campaign has raised more than £45,000. If Archie's treatment is granted on the NHS then the Vaughans will donate the money raised so far to brain tumour research, or, to help other families in the same situation who need to self-fund.
Archie's plight has also caught the attention of former Leeds United player Dominic Matteo, TV presenter Davina McCall and journalist Alex Brooker who have shared the GoFundMe campaign on their social media channels.
Speaking to the Yorkshire Evening Post from Alder Hey, Hayley added: "We have gone from we have not got long left, to, he might have a chance and this time a week ago we did not think this would happen so we feel happy to be here.
"Everyone is rooting for him, which is so nice, and that is helping us knowing that everybody does care and wants to help him and wants him to get better."