A WALK around Lake Weeroona today boosted the sum of funds raised by a Bendigo boy and his family for research into a rare bone disease to about $10,000.

More than 100 people joined eight-year-old Isaac Baré, his family and friends in their walk around Lake Weeroona today.

The eight-year-old boy's mother, Sharyn Baré, said it raised her family's spirits to see the strength of the community's support.

"We feel very humbled," she said, passing on "a very big thank you" to all who assisted.

The fundraising link is still open online at gofundme.com/f/walking-for-awareness

Earlier:

ISAAC Baré looks like a healthy eight-year-old so it can be hard for people to understand he's in pain.

But the Bendigo boy's community has rallied to support his fundraising efforts, which have raised more than $8000.

The efforts have also increased people's understanding of Isaac's invisible illness.

Isaac suffers from rare bone disease chronic recurrent multifocal osteomyelitis. Only a handful of other children are known to have the disease in Australia.

It causes inflammation as Isaac's immune system attacks his bones. Doctors don't yet know what causes the attack.

Read more: Kiama hopes to raise awareness for rare disease

Mother Sharyn Baré said the symptoms put strain on the family, with frequent trips to hospital in Melbourne and missed school days.

Ms Baré said Isaac experienced fevers and extreme pain when the disease flared up. The pain can last for minutes, hours or weeks. Some days, he can't walk because of it.

And because Isaac looks so well, it can be difficult to get people to understand what the disease means for him.

It's this element of unknown that's the challenge. No one knows what they're dealing with.

"It's hard because people don't understand it, I don't even understand it. Going to the doctors, they don't have the answers [which] can be frustrating," Ms Baré said.

"It's difficult getting people to understand it. Even with school, trying to get them to understand that we need to make modifications, even though he can look well."

Isaac was diagnosed with CRMO aged four or five.

His parents first noticed something was wrong when Isaac was three, limping and in pain. Initially he was treated for fractures, but it took 18 months of tests to isolate the real cause.

OTHER NEWS:

Ms Baré said this time was a scary experience. CRMO is diagnosed by exclusion, so there was talk of cancer and leukemia before doctors found the cause of Isaac's pain.

Fundraising efforts began more to raise understanding among Isaac's community about CRMO. But it's also led to the Baré family finding another Victorian child with the illness, a nine-year-old girl from Aireys Inlet.

Ms Baré said it was amazing to meet a family who understood what it was like to not have answers. Isaac himself said it was good to finally get to know someone who had CRMO.

"It was quite powerful seeing the kids. A, 'Someone finally gets it' moment," Ms Baré said.

"It was just quite nice to feel that they weren't alone either."

Isaac will walk around Lake Weeroona with dozens of family and friends on Sunday to raise funds for research into CRMO. Anyone can join at 11am, with a $5 donation to CRMO research.

More at: gofundme.com/f/walking-for-awareness

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