BLANK looks usually greet Tara Jeffery and her son Sean when they make one of their many trips to the emergency department.
Sean has a rare kind of epilepsy called Dravet Syndrome and medical staff often have to look up his condition on the internet just to treat him.
Sean has a team of specialists who care for his complex needs at regular appointments and when Ms Jeffery goes to government agencies for help, his condition often does not tick the right boxes.
Such is the plight of the carer of a person with a rare disease.
Ms Jeffery, who had her son at 16, is just 25 and a full-time carer for Sean, and Tiarna, 4.
When Sean was diagnosed she knew no one in the same situation. The nearest person with her son’s condition is in Victoria.
Ms Jeffery, of Fennell Bay, was so isolated she started an epilepsy Facebook page, which now has more than 2100members.
Dravet Syndrome is a severe life-threatening form of epilepsy that affects one in 30,000births.
In five years Sean had just 11days that were seizure-free, he’s developmentally delayed and needs constant care.
‘‘It’s heartbreaking watching your child seize every single night and wondering if this is going to be the one that takes him,’’ Ms Jeffery said. ‘‘It’s draining, just a constant battle.
‘‘I know somewhere in there he’s a little character, but he’s just hidden.’’
A benefit night to help Ms Jeffery buy a car to transport Sean is to be held at Wangi RSL on March 16.