Last night, Anne’s courage and selflessness were honoured when she was presented with the Munster Carer of the Year award in Clonmel, in recognition of her work caring for Tamara.
The young girl suffers from the neurological disorder Canavans disease, a rare and fatal illness that leaves children severely mentally and physically incapacitated.
Anne has previously lost two children to Canavans disease. David, their eldest child, died aged just 18 months, in 1989, and Mark, Tamara’s twin brother, died three years ago aged seven.
Today she devotes every hour to providing full-time care for Tamara at the family’s home in Mullinahone, Co Tipperary, with the support of husband James and other children Jamie, 25, Linda, 21 and Andrew, 7.
“She’s not able to do anything for herself,” Anne said last night. “Everything has to be done for her, but she’s a great little child, a very placid child and it’s a pleasure to have her.
“They look perfect at birth, but it gets worse as they get older,” Anne said.
Tamara is unable to walk and can do barely anything for herself, but attends Scoil Aenghusa in Cashel for a number of days most weeks — “she gets very tired and I don’t let her go every day” — while the Carers’ Association provide support to the family with nursing care.
Catherine Cox, of the Carers Association, said that Anne had dedicated her life to caring for her family.
“Anne has suffered much hardship at the hands of Canavans disease and it is the mark of a strong woman that she continues to care so selflessly for her daughter Tamara.”
Anne and her family will be guests of honour at the Carer of the Year award ceremony in Dublin on November 10. They will be joined by the other regional winners from Leinster, Connacht and Dublin.
Meanwhile, they fight on to keep their little girl as happy as possible, while the future for Tamara remains unknown. “When David was born, they [medical experts] thought four years was the limit. When we had the twins, they were still saying four, then they were saying seven.
“They really don’t know. You just take every day as it comes and enjoy her when you have her, every minute you have with her.”