A 14-year-old girl, diagnosed with the rare blood disorder PNH, has been cured following a successful bone marrow transplant at Our Lady's Children's Hospital in Crumlin.
Claire McNamara is believed to be the youngest Irish person ever diagnosed with the life-threatening condition, which affects just one or two people per million.
Earlier this month, the Health Service Executive sanctioned the use of the drug Solaris to treat the illness, at a cost of around €430,000 per patient per year.
The drug does not cure the condition.
Claire's bone marrow transplant last November cost approximately €85,000.
Two months on, the consultant who led her treatment says the teenager is doing very well.
However, Professor Owen Smith says only a certain subgroup of patients with PNH can be cured through stem cell transplantation.
The technique can also be used to treat other rare diseases, such as sickle cell anaemia.
Prof Smith says he has asked the HSE and the Department of Health to provide extra resources - including a transplant physician and nurse coordinator - to treat patients with these conditions and increase their quality of life.
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