Fiona O’Brien speaks to a Wexford mother about her family’s journey to Newcastle to help cure her six-year-old daughter of crippling arthritis and welcomed support from the Wexford Association London
Deborah O’Farrell has been staying at her daughter Ciara’s hospital bedside for over three months as she recovers from a stem cell transplant to address ‘a very severe case of the worst type’ of systemic juvenile arthritis.
Ciara was diagnosed when she was just two years of age, with it affecting 60 of her joints and at risk of striking her organs as well.
“Ciara is a real credit to herself. We never molly cuddled her so it was only when you see her around other children that you really know that she’s different. Having to help her on to the bouncy castle at kids’ parties and things like that,” says Deborah.
“She also had so much pain and constant visits to the physiotherapist and occupational therapies.”
Doctors said that she may grow out of it as she got older, but as she spent four years travelling two and a half hours to Crumlin every week it became clear that Ciara was fighting a very acute case of JIA.
They were given the option of a stem cell transplant, with Ciara’s four-year-old brother Cian being the donor, in Newcastle. It would mean a lengthy period in hospital and a course of chemotherapy for Ciara as her immune system was practically wiped to allow for the new cells to take effect.
“We wanted to put it off as long as we could due to the financial aspect of travelling to England for such a long time,” says Deborah.
Ireland’s HSE covered the cost of the operation under the Treatments Abroad Scheme and paying for initial flights to Newcastle for Ciara, Cian and Deborah.
The hospital has an apartment to stay in, but two miles away Deborah prefers to stay at Ciara’s bedside especially as she has taken so long to recover. A teacher’s visit and a play specialist session gives her the two hour window she needs to wash clothes and do the shop before she returns to Ciara’s side.
The family must cover their own living expenses in the U.K, including flights back and forth and scaling down their business.
“We run a small family business where myself and my husband Conor were basically the only people working there and we also have our son to look after too.
“We were living in hope that a new drug would become available in Ireland or that she might improve on her own. But it got to the stage where she was on the highest dose of medication where she was getting an infusion every week in Crumlin, but yet her steroids were going up as well.
“The whole idea of the medication was to wean her off of the steroids until she went into remission, and as she had started primary school we were thinking she couldn’t keep missing a day of school every week as well. It was taking its toll.
“Her growth is stunted and her brother, two years younger, is the same height as her so we couldn’t really let it go on for much longer. She’d also probably need to have joint replacement in her early teens which would cause problems of its own”
Ciara underwent chemotherapy, losing her hair, before the transplant before her brother travelled over for the transplant.
“Talking to people before hand they said that it would be very painful, teenagers had said it was very sore. But there wasn’t a bother on Cian, he just lay in bed watching Scooby Doo and eating Weetabix! Apart from the vomiting it went quite well for Ciara too, but it’s after that that it went a bit pear-shaped.”
Since the transplant seemed to be a success, the family thought that they would be able to return home at the end of January. Ciara would have to live in a ‘halfway house’ once discharged from hospital to keep an eye on her and readjust her to life in a family environment, but a series of viruses means her recovery is taking longer than expected.
“Things were going really well but then she got a virus and she’s got hemorrhagic cystitis which has set us back a bit. I think we’ll be here another couple of months anyway.
“It’s tough, Conor comes over every second weekend as we have to keep the business running at home too. And Cian and Ciara really miss each other, they’re best friends, especially when it was coming up to Christmas as we didn’t know if Ciara would be out of the hospital.
“She was doing well then so we actually had the keys to the halfway house. We weren’t going to bring Cian over for Christmas if that wasn’t the case so we were lucky. She was able to spend the day with him, leaving the hospital at midnight on Christmas Eve and didn’t have to be back in until 4pm the next afternoon.”
But Ciara’s immune system, through her T cells, is taking longer than expected to come up. The virus in her blood could take 120 days for them to fight, as the treatment can’t get rid of it completely.
“She’s in a lot of pain, but as a six-year-old she can’t describe it. She’s not Ciara at the minute, her quality of life has gone. She’s always been so active and bubbly, but she can’t now.
“She’s been in the bed for well over a week now as she has a catheter in for the hemorrhagic cystitis, she’s passing a few clots so they have to leave it in for as long as there is blood in the urine. I don’t know how long more this will be in, maybe another week or so.
“We just didn’t foresee being away from home for this long. It’s tough. Conor has had to employ another lad to help with the business, but he’s also doing the pricing and admin stuff that I used to do as well.
“That’s on top of doing the school run for Cian and dinners and that and travelling back and forwards to visit Ciara.”
The family have received help through their own fundraising and a chance intervention by the Wexford Association in London.
“When she was getting worse we knew we had to go for the treatment, so started fundraising ourselves. We did a kid’s fun day and a coffee morning which didn’t get much of a turnout. Then we had a benefit night, not many people showed up but we did sell quite a lot of tickets.
“Then the local paper did a feature on us and Noel Swaine, who lives in London, was at home and seen it. He got onto the Association and they donated £500 to us, which was fantastic, we were delighted, absolutely over the moon!
“Michael Sills got on board then. It turned out that Conor done his brother’s kitchen and we only realised the connection afterwards. He came to visit us at home and Ciara obviously triggered something in him and he wanted to help.
“Through his fundraising in London he’s raised about £7,000 for us. I would just love to thank Michael and Noel and the generosity of the London Wexford community over there. They don’t know us at all and they’ve just got behind us. We really are grateful to them and all their helpers!”
And what of day-to-day life and the future?
“At the minute we’re getting sick of ready meals! We never had one until we came here and there’s no over or toaster in the parents’ room.
“They’ve said the arthritis should be gone. We’re waiting for the donor cells to come in to give us a bit more reassurance but she should be ok.
“Doctors say her growth should catch up, but there’s no guarantees, so we’re just waiting on seeing what she’s like before she’s just discharged.
“We’ve another couple of months in the hospital and then at least another month in the halfway house.
“When she goes home she won’t be able to go back to school for a good bit, they guess about 12 months from the time of the transplant because it takes a while for her immune system to get back up.
“She won’t be able to go to any public places such as swimming, supermarkets, cinemas, playgrounds. It’s hard to tough to explain to a six-year-old about the long term when they’re invited to a birthday party!”
- To learn more about Ciara’s fundraising visit the Cure 4 Ciara Facebook page or the iDonate page iCAN Help Ciara.