Cashel's 'overwhelming' support for brave Lee

The community in Cashel is rallying around a local family whose young son has been seriously ill since he was born 15 months ago.

The community in Cashel is rallying around a local family whose young son has been seriously ill since he was born 15 months ago.

Lee, the younger son of Ellen O'Brien and Mark Moloney, has several complications but his overall condition has so far baffled doctors around the world. His life expectancy cannot be predicted and medics are unable to say whether he will ever walk, talk or see.

"It has been very traumatic and tough because he has been so sick", said Ellen, who lives with Mark, Lee and their other son, 5 year-old Anthony, in Castle Green Crescent.

However their trauma has been alleviated by the tremendous support that their families, friends and the local community have offered in their time of need. "The support has been overwhelming, even from people who don't know us", said Ellen, who works as a special needs assistant at Scoil Cormac.

Lee is a regular visitor to Temple Street Children's Hospital in Dublin, which has put him on a genetic data base where doctors around the world can examine his symptoms in an attempt to diagnose his condition.

He was born five weeks prematurely on August 19 last year at the Rotunda Hospital in Dublin with a condition known as foetal hydrops and had so much fluid in his stomach that his chances of survival were considered slim.

But he battled through that initial setback and after two weeks in the hospital's intensive care unit was transferred to the special care unit at the South Tipp General Hospital in Clonmel. He had a blood transfusion during his six weeks spell in Clonmel but when the couple brought him home he was unable to feed properly and is now fed by a tube that pumps directly into his stomach.

Lee was later sent to Temple Street Hospital because his head was unusually large and he was unable to move or see, and his over all development delayed. The medical staff at Temple Street discovered that he was cortically blind - his eyes are perfect but a part of his brain hasn't developed properly.

The doctors believe that he suffers from a genetic syndrome, although they have thus far been unable to identify it. Blood tests sent to hospitals in Manchester and Paris have proved inconclusive.

It was during the couple's regular visits to Temple Street with their son that local woman Josie Butler and her husband Liam started the fundraising campaign. Josie was a great friend of Lee's late grandmother Ann Moloney, who died a few years ago. Josie and Ann had made a pact that in the event of one of them dying the surviving friend would watch out for the other's children.

The fundraising campaign started with bag packing at the SuperValu supermarket and continued with a darts tournament at Brosnan's bar. There are also plans to raffle a jersey signed by the Munster rugby team.

The money collected so far has helped to pay for Lee's twice monthly osteopathy treatment, which Ellen says has made a huge difference. "Lee also has cerebral irritation where he can scream for long periods but that has really improved since he started attending the osteopath", she said.

Ellen and Mark, both of whom are 26, are also exploring the possibility of taking Lee abroad for treatment. They've been in touch with the Institute of Human Potential in Philadelphia and another hospital in New York.

They've even looked into stem cell treatment in China, which would cost €30,000. However Ellen says that this treatment is still at an experimental stage and would involve injections in the eyes and a lumber puncture, which she fears might be too severe for Lee.

"I would beg, steal or borrow the money from somewhere if we thought there was somewhere we could take him", she says.

While Lee is still like a new-born baby, Ellen says that he has improved in some areas but has regressed in others. Despite his illness, she says that "Lee is as cute as a fox. He knows all our voices and knows who to play up to".

She says that his older brother Anthony is also very good with him. There have been times in the past year when Anthony's life has been put on hold while Lee has been brought to Dublin for treatment but Ellen says that Anthony is not in the least bit jealous of the attention his brother receives.

As well as their families, who Ellen says are excellent, the couple have also received great support from the Jack and Jill Children's Foundation, which provides care and support for children with severe neurological development problems, as well as offering respite to their carers.

The Foundation's nurses call to the family home for four hours, two days a week to give Mark, who is Lee's main carer, a break.

"Their expertise is invaluable and if Lee gets into any difficulties they know exactly what to do", says Ellen, who's hopeful that the Foundation's funding won't be affected by the latest round of cutbacks.

Mark and Ellen are also extremely grateful to the Temple Street and Rotunda Hospitals in Dublin and the South Tipp General Hospital for their outstanding care for Lee.