Dubbed a one in a million disease, dyskeratosis congenita effects just seven people in Australia and three of them are members of the Possingham family of Learmonth.
The family found out their three younger children were affected by the illness following the difficult birth of 5-year-old Oscar.
Doctors tested the rest of the family and discovered Oscar’s older brother Nathan and sister Heidi as well as their mother Michelle Corcoran all had the illness too.
Luckily, father Grant and oldest son Justin, 13, were found to be unaffected by the disease.
Dyskeratosis congenita is an incurable genetic disease that causes skin discolouration, deterioration of the finger and toe nails and white mucus spots in the mouth that carry potentially precancerous cells.
The kids are at a higher risk of of pulmonary fibrosis, developing certain cancers and the illness causes progressive bone marrow failure, leaving the kids without properly functioning red blood cell production.
About 90 per cent of dyskeratosis congenita sufferers need bone marrow transplants throughout their lives and the Possingham children will be having bone marrow biopsies next month to gauge the progression of the illness.
Ms Possingham said the family have been dealing with managing the illness as best they can but it’s a trying situation to be in.
“There has been lots of travel to and from Melbourne to have regular appointments with specialists; there were 13 doctors we were seeing at one stage but now we are down to seven,” she said.
Mr Possingham said it’s particularly hard when they travel to the hospital for tests because Nathan, Heidi, and Oscar don’t look sick on the outside.
“They go the hospital and see the other kids and wonder why there are no other kids the same as them,” ” he said.
While the family have had to manage this illness day to day, they have had help from charities and organisations like Camp Quality and Very Special Kids.
Very Special Kids have given the family opportunities and experiences they cannot afford with all their money being eaten up by specialist appointments and hospital visits.
The charity has also given the Possingham family a chance to connect with others who are experiencing the same grim reality of having sick children.
The Very Special Kids Piggy Bank appeal will be coming to Ballarat on Saturday, September 23 with a three-meter tall pink piggy bank rolling into Bunnings where the public can donate to help kids with life threatening illnesses.