When Ciara was two years old, she started to get a spiking temperature twice a day and a rash around her tummy and back. At first, the doctor thought it was a viral infection but she was sent to Wexford General Hospital for a week’s observation.
She came home from hospital but wouldn’t put her right foot on the floor. We went back to hospital on the Saturday and she was given an intravenous antibiotic. An ultrasound of her hip showed some inflammation.
The doctors began to suspect juvenile arthritis. We were sent home and told to go to Our Lady’s Children’s Hospital in Crumlin on Monday.
Ciara’s hands and feet swelled up over the following days. We went to the emergency department in Crumlin and Ciara was given a bed. It took three weeks to do all the tests before she was officially diagnosed. She had various blood tests to eliminate other conditions and a lumbar puncture to rule out leukaemia. She had stopped eating at this stage, and lost a lot of weight. I was six months pregnant with Cian, but Ciara was so upset I had to sleep in the bed beside her every night.
Her official diagnosis is systemic juvenile arthritis, which is the most severe type of juvenile arthritis. In total, 60 joints in her body are affected. It was devastating news for us, and we don’t know whether the viral infection caused it or whether there are genetic or environmental factors.
Ciara was put on several medications straight away. These included steroids twice a day and Methotrexate, an immunosuppressant medication. My husband, Conor, was shown how to administer it via injection; I couldn’t handle it because I was pregnant. After about six months, this was changed to a daily injection of the biologic drug Anakina into alternate legs each day. Again, Conor had to give her the injections before he left for work.
Trial drug
Although Ciara continued on all this medication, her condition didn’t improve. In November 2010, she became the second child in Ireland to be put on Tocilizumab, another biologic immunosuppressant drug, which is still under trial. Ciara was given this drug in the hope that she could come off the steroids, but this hasn’t happened.
She has to go to Crumlin hospital every week now to have this injection. She also takes calcium, vitamin D and folic acid.
We found initially that her legs were looser on the new treatment and we managed to reduce the dose of steroids for a while, but then she got a flare-up and we had to give her the higher dose again.
We’ve been told that about 60 per cent of children with juvenile arthritis grow out of it by their early teens. Ciara is now six, and is healthy apart from her arthritis. She’s in senior infants now. She’s brilliant at mixing and doesn’t let things hold her back. She’ll try anything.
It was only when we saw how flexible Cian was – he is four now – that we realised how limited she is in her movements. Her fingers are starting to turn in and she has erosion on her hips, knees and wrists. She has to wear compression gloves when her hands swell, and wrist splints to hold the joints in a stable position at night time. She has physiotherapy once a fortnight and exercises to do at home.
Some children go into remission, but this has not happened with Ciara. The rheumatology consultant in Crumlin recommended that we go to Great North Children’s Hospital in Newcastle, England, to see if it would be possible for Ciara to have a stem-cell transplant.
Her condition was deemed severe enough to be accepted, and the treatment will be paid for through the European shared treatment scheme. About 18 months ago, we sent a sample of Cian’s blood to see if he could be Ciara’s donor. He was a perfect match, although there is still the possibility that a donor will be chosen from the UK database.
When we were first told that Ciara could have the treatment in Newcastle, we were upbeat. But then we realised there is no guarantee of a cure and we held off for a while, as there are risks associated with the treatment. In the past few months, however, we have decided to go ahead with the treatment. We feel if we don’t do it, we will just watch her become worse.
As we are both self-employed in our kitchen manufacturing and fitting business, it will take a toll on our work. I will have to stay with Ciara in the hospital for three to four months before, during and after the stem-cell transplant. Cian will have to go over to Newcastle for a day or two: he told Ciara they are going to take out his solar system and put it into her.
Stem-cell transplant We went to Newcastle a few weeks ago to finalise everything for Ciara’s stem-cell transplant. We have been given a provisional “harvest” date of November 5th, when Cian will have his marrow taken out, but Ciara will start her “conditioning” – chemotherapy – about 10 days before that. The harvest will be on a Wednesday and the transplant will be done the next day.
Because of the living costs involved, and the cost of Conor flying back and forth, we have organised fundraising events. Wendy Costello at the Irish Children’s Arthritis Network (iCAN) runs a 24-hour helpline and she has been very supportive.
Even after Ciara comes home, she will have to stay away from crowds for about eight months while her immune system builds up again. The treatment wipes out her immune system completely so that the transplanted stem cells can replace it. Ciara won’t like missing school, but she has a great personality and a great outlook.
See facebook.com/icanireland. The bank details for donations to the fund for living costs during Ciara’s treatment are Deborah O’Farrell, Ulster Bank, sort code: 986440; account no: 12035760.
