Brave Katelynn can't get free care for rare disease

Katelynn Cogan: painful skin

Eilish O'Regan Health Correspondent

KATELYNN Cogan has to go to school every day swathed in bandages to protect her fragile skin that can erupt in painful blisters at the slightest friction.

The lively eight-year-old from Cloonare, Kilmovee, in Co Mayo suffers from epidermolysis bullosa – and the Budget decision to provide free GP care to all under-5s will be of no benefit to the brave young girl.

Her mother Anne Marie and father Ian are struggling to pay for the cost of the bandages, which can range from €500 to €2,000 a month.

The family, who have an older daughter Shannon, is devastated by a recent decision by the HSE to reject their application for a medical card, which would have covered the cost of the expensive dressings.

"There is no financial relief for GP bills or dressings. The main expense is the dressings. We were refused and are applying again on appeal.

"I have had to get letters from consultants and others and I am fighting the case.

"We would need to be millionaires to continue to pay that amount every month. It means that if we are turned down for the medical card again my husband, who is on a modest wage as a lorry driver, will have to think of giving up his job in order to allow us to qualify."

Ann Marie, who is a college student, added: "It is bad enough having a child with a disability without having to be constantly on the phone and battling with the HSE looking for information. It affects your whole personality because you are constantly looking for stuff."

"We were out just €60 in the means test. It is the wrong priority to give free GP care to millionaires' kids at this stage."