‘I am very frightened for my son’s future care’
One of seven children in the care of Dr Orla Killeen to be prescribed new drug Toxilizumab, Lorcan must travel every two weeks to Our Lady’s Children’s Hospital, Crumlin for IV infusion.
Door-to-door, the journey is four hours, but because of Lorcan’s condition and stiffness, it is necessary to make at least two stops to allow him to stretch, adding up to two hours to the journey.
His mother Tracey said: “I’m a teacher in Skibbereen so when I’m finished on Thursday, we leave straight from school at 2.30pm and travel up for an early start the next day in Crumlin. We overnight in a hotel in Dublin.
“On a bad day, we can be at the hospital from 8am to 6pm. Then we drive back down again. In the meantime, my friends look after my 8-year-old daughter Roisín.”
Tracey’s husband works at sea, three months on, two months off.
Fortunately, Lorcan attends the school where Tracey teaches and she can keep an eye on him.
He was diagnosed with systemic onset juvenile idiopathic arthritis in April 2009 and has been up and down to Crumlin ever since, under the care of Dr Killeen. The new drug he is receiving has helped his condition, although he has a constant low level of pain. If any problems arise, Tracey can phone the paediatric nurses in Crumlin who then liaise with Dr Killeen — the country’s only full-time consultant paediatric rheumatologist.
Tracey is dreading Dr Killeen’s departure — she is due to start maternity leave from the end of this week and her replacement will operate clinics just two days a week.
“Dr Killeen has always been the one who oversees his care and who administers his annual steroid injections. I don’t know who is going to do it now. I am very concerned and frightened for his future care,” Tracey said.
Her concerns are echoed by many parents on Arthritis Ireland’s Parent2Parent Network on Facebook.
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