14-year-old Claire McNamara is believed to be the youngest Irish person to ever have been diagnosed with PNH, a rare blood disorder which affects less than two people in a million. But thanks to a bone marrow transplant, the youngster is said to be doing fine.
The Health Service Executive (HSE) sanctioned the use of the drug Solaris to treat Claire but unfortunately this €430,000 drug does not cure the condition.
However, following on from a successful bone marrow transplant last November at Our Lady’s Hospital in Crumlin, Dublin, Claire’s consultant Professor Owen Smith says she is now doing really well.
Talking on Newstalk Lunchtime, the consultant along with Jonathan Healy said that Claire “has a specific form of PNH, which is the more common form of PNH in children. Now it is incredibly rare in children so what she presented with was her bone marrow failed, basically, and what was driving that was the PNH process.” While they originally looked to Claire’s sister as a bone marrow donor who unfortunately was not a match, they ended up having to look further afield and managed to find a donor in Germany.
Talking about the fantastic outcome, Prof Smith said: "This is the only form of cue for PNH so everybody is happy about the outcome for Claire.”
In a day when a link was discovered between the mothers of children whose infants wake often during the night and mental conditions such as depression and stress, it's great to hear some happy news.