THE FAMLY of a bubbly and bright six-year-old girl who suffers from a debilitating illness are seeking help to fundraise so they can bring their daughter to the UK to have a life-changing procedure.
The O’Farrell family, from Cleariestown but originally from Wexford town, has been travelling up and down to Crumlin Children’s Hospital every week for the past four years with their daughter Ciara who suffers from Juvenile Arthritis, an autoimmune disease that attacks the little girl’s joints and could possibly spread to attacking her organs if she is not treated soon.
At present, Ciara is one 1,000 kids suffering from the illness but is among the top five worst cases in the country. As a result of her illness, Ciara has stunted growth and splints on her fingers to try and straighten them.
To that end, the family is planning to bring Ciara to Newcastle in the UK where a stem-cell transplant of bone marrow, donated by her brave four-year-old brother Cian, could help to cure the six-year-old’s illness.
However, the family is also facing the daunting prospect of at least four months of living in the UK and contending with living costs over there as well as bills at home and attempts to keep their small furniture-making business going while caring for Ciara in the UK. Their health insurance will only cover the flights for the family and procedure for Ciara.
Ciara’s parents Deborah and Conor explained that Ciara had first been diagnosed in 2010 at the age of two after presenting in hospital first with a rash, then with pain in her leg and inflammation on her hips. She was later transferred to trouble with the parents being told that the sooner she was seen and treated, the better.
Conor said: “That sent alarm bells off in our head when we heard that. We couldn’t get into Crumlin that week but over the weekend her hands and feet swelled up. Juvenile arthritis is not like the osteopathic condition, it’s an autoimmune disease that attacks the whole body.”
Eventually the parents got in the car and drove up to Crumlin where, on presenting in A&E a rheumatologist had Ciara admitted to the hospital where she underwent three weeks of tests before being sent home on a high dose of steroids which she has been on ever since.
“She’s been put on various drugs over the past four years and for most other kids they’re able to wean off the steroids after that but we’ve never been able to take her off them because she’d be in too much pain.”
Now the family is hoping that a stem-cell transplant in Newcastle in October will help to cure Ciara’s condition.
Conor and Deborah said: “We spent a long time considering the option because there’s a lot of risk involved. But her list of medication is getting longer and longer and we have to give her the chance of a normal life. She deserves that.”
If anyone would like to donate to the family, their iDonate page is listed under https://www.idonate.ie/fundraiser/31236_ican-help-ciara.html. Anyone interested in running a fundraiser for Ciara can contact Deborah on 087 9534 245.
[Full story in this week’s Echo]