Brave Ciara is bubbly three-year-old thanks to treatment for rare disease

Sian Moloughney

Sian Moloughney

Seeing three-year old Ciara Casey with her bottom sticking out of a kitchen press, as she makes a mess and rummages through her parents household items was one of the best things her dad has seen in months. Ciara suffers from a very rare medical condition and to see her chatting away and being a ‘normal three year old’ is a huge relief to her parents.

Speaking from Our Lady’s Hospital, in Crumlin, where he was keeping vigil as Ciara goes through another week of chemotherapy treatment, her father Peter said his daughter is “in good form” and “in a much better place than she was last March. She’s a bubbly three year-old, it’s a huge relief.

“Ciara was two and a half months lying on a bed. She’s the kind of child (before) that if she was up she was gone. It’s a relief to have her back to herself. She’s up and about, doing what she should be doing. It’s great when you go into the kitchen and her backside is sticking out of a press she is ransacking!” Peter shared his joy at his daughters progress. “She’s full of chat, our own three year-old back to us again. She’s into things she shouldn’t be into - it’s great!”

The little girl from Cashel has even awarded a medal for bravery by the doctors and nurses of Our Lady’s Hospital.

Ciara has to attend the Crumlin hospital ever second week for a full week of treatment, and on the other weeks she attends for a one-day treatment. Although she is two weeks behind, because of high temperatures, doctors are very pleased with her progress. It will be almost a year before her treatment ends, but mum and dad, Peter and Susan, have been told that eight out of ten children do make a recovery from this illness.

“To think back on what we are after going through gives me a lump in my throat,” Peter described his family’s ordeal since his little girl became sick. Now he is happy just to have his child in his arms, he told The Nationalist. “The treatment is working, they seem to be very, very happy with her. She has put on weight.”

Ciara spent ten and a half weeks in hospital but was allowed home earlier than expected, which her parents see as a good sign.

“Ciara has a long way to go, she will be four by the time it ends, if things go to plan. The main thing was to identify the problem and get on top of the problem, which they seem to have done. Now they have to kill off the problem.”

A great source of comfort to Peter and Susan has been a contact they made in Northern Ireland. A lady there has got in touch to say her daughter had the same condition as Ciara, and she has now been in full remission for ten years.

Ciara’s condition, called ‘LCH’ - Langerhans Cell Histiocytosis, is not a cancer but it works on the body like a cancer so it treated like one. One person in four million is thought to be affected by LCH.

Peter, and his sister Theresa Delahunty, were both fulsome in their praise and thanks for the local community who have rallied around and supported fund-raising ventures for the Casey family.

“People have been absolutely brilliant. It’s unbelievable, overwhelming, and it’s still ongoing.”

Theresa said the whole family want to express their thanks to everyone who has been involved in organising and supporting the fund-raising.

Looking after Ciara is a full time occupation, when she’s at home in Cashel, as Peter and Susan watch for any temperatures or signs of infection, and every second week they spend in Dublin with Ciara. Peter hasn’t been able to return to work.

He said the family don’t travel far from home, even when Ciara is out of hospital, maybe just to Clonmel, as there is a hospital close by if she does become ill. Recently they did enjoy a day out at the New Inn festival.

Peter, Susan and Ciara live at Carrig Downs, on the Dualla Road in Cashel.

A fundraising soccer match will take place in Tipperary Town on Friday, July 13. The match will see the ‘Over 30s’ take on the ‘Under 30s’ of the newly formed Tipp Town club, on the pitch at St Ailbe’s school. There will also be a ‘Crossbar Challenge’ on the night, which will start at 7pm.