Fundraising to aid twins brain surgery

Baldivis twin brothers, whose brains are “slipping” into the bottom of their skulls, will undergo critical brain surgery next week after both teens were diagnosed with a rare and incurable brain disease.

Jack and Alex Barnes, 16, were diagnosed with chiari malformation in august this year after both suffered constant headaches and random nosebleeds.

The twins’ mother Stephanie Barnes said after Jack’s confirmed diagnosis she realised Alex was experiencing similar symptoms, which turned out to be a smaller but just as serious brain condition.

The rare disease affects about one in 1000 people and causes the lower part of the brain tissue to extend into the spinal cord, blocking the flow and creating a build up of fluid on the brain.

Both teens now require crucial surgery, which involves removing part of their skull and first vertebrae before patching their brain in place.

Ms Barnes said while there was no cure for chiari, she remained positive.

“Long term we don’t know what will happen, but we just hope the surgery fixes as much as it can and helps reduce the symptoms.”

The family has now launched a crowd-funding campaign to raise money to cover the cost of the $15,000 per child surgery.

Fundraising efforts will also go towards associated expenses in travelling to Sydney.

“People have been so good,” she said. “There are complete strangers we don’t know sending us money, it’s been amazing.”

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