Diagnosed with juvenile arthritis when her knee swelled at age three, the 15-year-old, from Bansha, Co Tipperary, went into remission for a number of years, until at age seven, her joints began to swell again.
“I remember being in the Japanese Gardens in Kildare having a picnic when Niamh said ‘I can’t stand up’,” recalls Wendy, her Mum.
Since then, Niamh’s condition has got progressively worse. In primary school, the crippling condition affected her lower limbs, but by secondary school, it was in her hips, wrists, fingers, shoulders, and more recently, her jaw.
“She ended up in a wheelchair for eight months. She had to do her Junior Cert like that. And because we had to travel to Dublin for treatment once a week, she missed out on a lot of school,” Wendy says.
The treatment Niamh is now on — and has been for the past nine months — involves travelling to Crumlin children’s hospital once a week for an infusion of drugs Wendy describes as “the last line” for treatment of juvenile arthritis.
The drugs are delivered by way of an IV drip. Wendy says they’re having a positive effect but the weekly trips to Crumlin are draining and disruptive to school work.
“On the days we travel, we leave home at 6.30am. By 8am, we’re sitting in the waiting room of the medical day ward at Crumlin, even though the infusion doesn’t usually start before noon and has been as late as 3pm,” Wendy says.
The infusion process takes an hour-and-a-half followed by an hour-long wait afterwards, in the event Niamh suffers an allergic reaction.
The trip and the treatment combined leave Niamh exhausted, Wendy says. It also means that her other 10-year-old daughter has to stay with relatives or friends on the days in question.
Wendy believes her daughter would benefit from infusion treatment closer to home. Some children do receive treatment at Cork University Hospital she says, and she is working to see if her daughter can avail of that option.
In the meantime, she has formed ICAN (Irish Children’s Arthritis Network) a support group comprised of parents of children with juvenile arthritis.
As well as pressing for a dedicated juvenile arthritis ward at Crumlin — currently children are placed on general wards — they would like to see a number of outreach clinics around the country when children could be seen and treated rather than having to travel to Crumlin.