Corbin Belt suffers from the epileptic condition where he has seizures which are frequent and can last seconds, minutes or hours.
At present there is no cure available for Doose Syndrome.
Corbin’s condition is extremely rare and the seizures can come in waves without any warning.
His parents, Melissa and Travis, have been helping him navigate life since his diagnosis when he was 3.
Corbin recently had a surgical procedure to have a peg placed as a permanent measure to replace his nasal gastric tube.
He has been fed this way for four years.
Complications with the surgery meant Corbin ended up being put into a medically induced coma for six days to attempt to break the seizure cycles and gain control with a cocktail of anti-seizure medications.
Corbin has since come out of the coma, is able to talk, is slightly more alert but is still immobile.
Mrs and Mr Belt have had to leave work to assist Corbin, and leave their two daughters Kenzie and Ella in the hands of family friends while they have been away.
"It’s scary and overwhelming," Mrs Belt said.
"It has definitely been a bit of a hard time recently.
"I find it so hard to ask for help, but I am extremely grateful to those who have done what they can to help us when we have needed it the most."
Community members have stepped up to organise fundraising to provide financial assistance where they can.
"The community support has been massive.
"We’re especially grateful to those who have helped with our daughters while we have been away with Corbin," Mrs Belt said.
Friend of the family and key organiser Dianne Elstob said she knew how hard it was and sympathised with the family.
"We understand what’s going on as we have our own struggles.
"The financial burden is so hard, and it’s even harder watching your child have a seizure and being away from your other children.
"We really sympathise with them and we want to do anything we can to help."
She has started a firewood raffle thanks to the donation of wood from a local Gore family, and a Givealittle page to help.
She encouraged people to get involved to support the family.
People could call her on (027) 773-2700 or find her name on Facebook and message her there.
People could also go to the Givealittle page "Corbin needs our help" if they were keen to give.
