Ciara (6) to undergo stem cell transplant
A six-year-old Wexford girl who suffers from crippling arthritis is to undergo a pioneering stem cell transplant with her four-year-old brother as the donor.
Ciara O' Farrell, of Cleariestown, was diagnosed with 'a very severe case of the worst type' of systemic juvenile arthiritis when she was just two years old.
She has spent four years on daily steroid medication and weekly infusions of the immuno-suppressant drug Tocilixumab, administered in Crumlin Children's Hospital in Dublin.
The agonisingly painful disease affects every joint in Ciara's body.
Despite high doses of strong drugs, Ciara's condition is worsening. Her swollen fingers have started to curl up and she has difficulty running.
She wears finger and wrist splints along with compression gloves to ease inflammation.
Her only hope of avoiding joint replacements in her teens is to have a stem cell transplant.
The operation is carried out at Newcastle Hospital in the U.K. where Ciara was assessed by doctors as a suitable candidate with her younger brother Cian as a 100% donor match.
Their parents Conor and Deborah made the tough decision to proceed with the transplant which carries risks.
'We have deliberated over the past year and a half, because there are a lot of factors involved,' said Deborah who was pregnant with Conor when Ciara was diagnosed with the chronic illness.
'There is a fifty per cent chance she could be infertile after it. There is a ten per cent mortality risk and there is no guarantee that she wouldn't get the arthritis back in some form', she said.
'This is a chance for a cure but there are no guarantees,' said her dad Conor.
'We're scared to think about how bad her condition could become,' he said.
Deborah said the level of medication her daughter is on is not a long-term option.
'It's barely holding it,' she said.
'A lot of kids in Ireland who are on Tocilixumab have come off steroids but Ciara is still steroid-dependent.'
Despite her debilitating illness, the Kennedy Park school pupil is a bubbly, outgoing child.
'We don't mollycoddle her. We get on as normal,' said Deborah.
'She is a fantastic person. Everyone she meets falls in love with her.'
The operation which will involve taking bone marrow from Cian and injecting it into Ciara in the form of a blood transfusion, will be carried out in Newcastle within the next three months.
Before the procedure can proceed, Ciara must undergo a course of chemotherapy to wipe out her immune system.
She will spend up to three months in hospital followed by a period of time in an infection-free environment.
'She will be very prone to infection and it will be 12 months before she can fully integrate into normal life,' said Deborah.
The O'Farrell family will have to put their lives on hold while Ciara is undergoing treatment.
The HSE is covering the cost of the operation under the Treatments Abroad Scheme and paying for initial flights to Newcastle for Ciara, Cian and Deborah.
The hospital will put them up in an apartment nearby for the duration of their stay but they must cover their own living expenses in the U.K.
Conor will have to pay for flights to and from England over several months and will also be forced to scale down his business O' Farrell Fitted Furniture for a time, reducing the family income. A fundraising campaign is underway to help the O' Farrells to meet the costs involved and anyone wishing to donate can do so on the I Donate Facebook page by clicking on the ICAN (Irish Childhood Arthritis Network) link. If you would like to organise a fundraising event, contact Deborah on 0879534245,