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Island mufti day for student with brain tumour

Anjana Gadgil
BBC News
Family Photo Arlo looks directly at the camera, with a small smile. He has brown eyes and light brown/blonde tinted curly hair framing his face. Arlo wears a black round neck sweatshirt and the background behind him is out of focus.Family Photo
Arlo was diagnosed with an aggressive brain tumour after a spate of migraines shortly after he started college

Students and businesses across the Isle of Wight are wearing "what makes them happy" in honour of a 16-year-old boy who has an aggressive brain tumour.

Arlo, from Cowes, was diagnosed with the grade 4 tumour in October after suffering from multiple migraines.

More than 70 schools and businesses are taking part in the event to help raise money for alternative treatment.

Arlo's father Alex described the support as "beautiful" while his friend Taylor said he hoped the mufti day would put a smile on his face.

Arlo has been under the care of the NHS since his diagnosis but after months of research Arlo's family are now travelling to France, via a compassionate access scheme, for alternative treatment.

Alex looks directly at the camera with a slight smile. He has short greying hair, with a short grey and black beard and moustache. Alex wears thin round black wire frames glasses, a paisley printed red and yellow scarf tied around his neck and a black shirt jacket with the collar up. The background is softly focussed, but behind him there are rows of books on shelves.
The money raised will support Alex and his family to take Arlo to France for alternative treatment every month

He recently started taking a drug called ONC201, also known as dordaviprone, and will have to travel once a month to Paris for a month's supply of the medication.

A fundraising page set up to support Arlo's family and this treatment has raised almost £75,000, with more than 2,000 people donating to the page so far.

Alex explained the monthly cost of the treatment alone would be up to £10,000.

He said: "Our full time job has been the support and care of Arlo, and research to access him the drugs he needs.

"That's only been possible, initially because of the support of frontline charities, and then the incredible support of the community to raise the funds we need.

"The cost of the drugs is huge and totally beyond us and most families to fund."

Family Photo Arlo is lying in a hospital bed, with his hands behind his head in a relaxed position and he smiles looking off camera. He wears a blue and whit epinstripe hospital gown and the bedding he is in is white. He has shorter brown hair and some stubble lining his jaw and chin.Family Photo
Arlo's dad described his son as having an 'unflinching positivity' throughout his treatment

Alex said ONC201 was a drug with the potential to halt the progression and in some cases reduce the size of a tumour.

"That is giving time for more fun, more healing and the opportunity for more miraculous medicines and treatments to come along," he continued.

"Our hope is he is able to regain as much as possible of a normal teenage life - and that has started."

Family Photo Arlo is in a radiotherapy room, sitting on a platform looking at the camera and smiling. He is pointing to his head and wears a dark green beanie hat, with a beige and black striped t shirt and camel coloured overshirt and brown wide legged trousers and rubber soled trainers. Standing either side of him are three medical staff, they all have their thumbs up and are smiling at the camera.Family Photo
Arlo has recently returned to college having started the new drug ONC201

Alex said Arlo, who recently returned to Brockenhurst College in Hampshire, had chosen the theme "Wear What Makes You Happy" for the mufti day.

"It's beautiful because it comes from the same energy that Arlo is, he really enjoyed being a kid, he recognised that it was fun while he was a kid," Alex said.

"When the campaign was launched there was an incredible reaction. I don't know if I can get across to anyone how huge it is to be able to take action having found something that will help. It is life changing."

Family Photo Arlo and another young man stand at the edge of a mountain taking in the scenery. Arlo wears a long sleeved grey sweatshirt, with charcoal grey cargo pants and hiking trainers. He has a blue checked shirt tied around his waist, a headband around his forehead - keeping his brown hair out of his eyes and is carrying a dark red hiking rucksak on his back. He is standing, resting his hand on his left leg surrounded by green mountains.Family Photo
Alex said his son had really enjoyed his childhood and has so much joy for life

The original idea for the event came from Arlo's friend, Taylor, who said he "couldn't stop thinking" about how to help him.

Taylor explained: "My mates were donating their own money but it didn't feel enough, so I thought about a mufti day at my school, and then I thought it would be amazing for all schools to stand with Arlo and show that even though we are young, we can help too.

"Arlo is the nicest guy, he deserves our help. I hope this day fills him with a smile."

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