Three years ago, Will Tasic received a life-changing diagnosis after complaining he had something in his eye.
That "something" turned out to be a rare inflammation of the optic nerve between his eyes and his brain and because so little is known about the condition, the Tasic family only know the disease will progress but not how it will affect Will.
Will's official diagnosis is recurrent optical neuritis caused by anti-MOG, which was only confirmed early this year after three positive tests for the disease. In addition to affecting the optic nerve, it also affects the spinal cord and is similar to multiple sclerosis.
He is one of 138 children in the country with the disease.
With the Tasic family in the depths of despair following the diagnosis, mum Angie and Will decided they needed to find something positive to latch on to.
"When you are at rock bottom, the only way to deal with it is to flip it and try to find some sort of positive in adversity," Ms Tasic said.
We didn't think it would ever get to this out of something so negative. We want to help other people so they don't have to go through the pain and suffering that Will has gone through.Angie Tasic
So they set about fundraising for the Royal Children's Hospital, in particular the cockatoo ward which looks after children with neurological conditions, and where Will spent almost two weeks when he first presented.
In the past few years they have raised about $9000 for the Good Friday Appeal and Cure Brain Cancer Foundation, holding a fundraising day at the Portarlington Caravan Park where they holiday.
Now they have teamed up with Buninyong footballer Tim Brayshaw who runs the Brainless clothing company and is a passionate fundraiser for children with brain disease.
It was a chance meeting at the football and since then Brayshaw and the Tasics have formed a strong team.
The Tasic family has an Instagram day coming up, where Tim and the family go around to Ballarat businesses and people get their photo taken with Will and give a donation. These photographs will go on social media to provide exposure for businesses and awareness and funds for Will's fundraising efforts.
They are also organising a fundraising ball at The George early next year.
But more than the money, Ms Tasic hopes to raise awareness and provide support for other families going through a similar experience.
"We didn't think it would ever get to this out of something so negative. We want to help other people so they don't have to go through the pain and suffering that Will has gone through," she said.
"Meeting Tim, he's been the vehicle to keep this moving. we were advocates for ourselves until that chance meeting at the local footy club."
Tim was playing football for Buninyong when Angie and Will offered to help rattle a tin to raise money for the Cure Brain Cancer Foundation, which he is a strong supporter of.
The former North Ballarat Rooster raised more than $3000 during a 10km fun run in Sydney, and the foundation then invited him to run the New York Marathon on their behalf and he raised more than $19,000.
"When I got home from there I really wanted to help kids specifically with brain disease, so I reached out to the RCH where I volunteer once a week and wanted to create our own fundraising platform called Moondreamz," he said.
His clothing brand will also donate money to Moondreamz for the neurology department at RCH with a goal to raise $50,000 by the end of March.
He is now so close to Will and Angie that he accompanies them to Will's regular appointments at RCH.
"Thirty per cent of kids with brain associated disorders come from regional towns," Ms Tasic said. "It wasn't just isolating for Will but for myself, my husband and our two other kids.
"It changed our social life, it changed us mentally and the way you see the world, because you don't think things like this will happen to you, then you go through all the emotions of why us, why this kid?"
The team hope to get the Ballarat community and businesses involved in their Instagram days on November 21 and 22, and to support their fundraising ball next year.
"When we were first diagnosed I did my own research because it's such a rare thing. As a family we felt so isolated, with Will being the only one in Ballarat, and there was no support system even through the hospital.
"Now we've met Tim and got a great support system, with the hospital even making a plan for Will when he comes through emergency - but it's only the last 12 months where we've found that good support system."
Fear of the unknown looms large with Will's disease; because it is so rare there has been little research.
"Research has only really been done in the last 10 years so they don't know the long term effects, but there are a lot of problems with balance, seizures, some people don't walk and vision issues are pretty big.
"It's also affecting Will socially, particularly going to school. Chronic fatigue is a huge part of this so he doesn't go to school very often, which means there is then social breakdown so mentally it's tough on him and the family."
In addition to the chronic fatigue, Will suffers blurry vision, migraines, headaches and tingling in his fingers. Medication is reducing the symptoms and relapses for now.
"At first he came to me and said he had something in his eye, but I looked and there was nothing there. Over three days it was getting worse and was getting really sore so I took him to the doctor and was told it was a virus and if he wasn't better in 48 hours to come back," Ms Tasic said.
"In 48 hours it wasn't better and my gut instinct as a mum kicked in and I took him down to SpecSavers who looked at his optic nerve and said we needed to get to a specialist within 15 minutes.
"We went to the eye clinic and in 10 minutes were told we needed to hit the road to the Royal Children's Hospital, to not go home and just go straight there."
Emergency doctors spent 11 hours trying to work out what was wrong and how to medicate it by which time Will had no vision in his left eye.
He was moved to the RCH's Cockatoo ward where their fundraising efforts are now being directed.
"Over a week he had a lot of tests, MRIs, lumbar puncture, blood tests and was on IV steroids to tackle the inflammation of the optic nerve to the brain, which is rare in kids."
The diagnosis then had to be confirmed with three separate tests that had to be sent overseas with each taking at least three months to come back.
"My ultimate goal is to have Will be seen because it's invisible illness at the moment for him and when people don't see it, they don't think it's there."
Anyone interested in being part of the Instagram day can contact firstname.lastname@example.org
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