24-hour care for Liam as condition deteriorates

The condition of a young boy who has a rare and usually fatal disease is deteriorating.

Liam Heffernan, 4, underwent pioneering brain surgery in a New York hospital more than a year ago, but his parents have been told it will not cure him.

Tony and Mary Heffernan, of Keel, Castlemaine, Co Kerry, have noted signs that the disease — from which their only other child, five-year-old Saoirse, died last year — is progressing. “Liam has started to show some signs of deterioration, but he has a reasonable quality of life, at the moment,” said Tony.

“He now needs more supervision and 24-hour care. He still goes to play group most mornings, but has to have a minder with him all the time. We also have to keep a constant watch for seizures, which are the most dangerous thing.”

The Heffernans believe the treatment he received in New York — a gene transfer procedure administered to 12 locations in his brain — helped to prolong his life.

They are also helping other families of children with Batten’s disease, a neurological disorder, through the Saoirse Foundation and Bee for Battens organisation. Fewer than 10 such children are known in the entire country. The campaign has been broadened to include fundraising, research, and support for families who have children with other rare diseases.

Mr Heffernan, a member of the national steering group for rare diseases set up by Health Minister James Reilly, appealed to the public to take part in an online survey on Ireland’s first national rare disease plan (see exa.mn/survey).

Fundraising is also under way for Liam’s Lodge, a national facility for all children and families affected by rare diseases. Upcoming fundraisers include a car rally in Farranfore, Co Kerry, on Aug 5, and a function at the Carnegie Arts Centre, Kenmare, on Aug 11.

© Irish Examiner Ltd. All rights reserved

More in this Section

Speed a factor in one in three fatal crashes

US Congressmen bid to stop Cork to Boston route

€87k-a-year Paul Murphy criticised for seeking legal aid for trial

€23m in redress paid to Magdalene laundry survivors


You might also like

Breaking Stories

Elderly couple critically injured in Tipperary crash

10,000 Xanax tablets seized in Limerick

Interim payout of €3.5m and an apology given to 12-year-old injured at birth

MRI waiting lists in Cork reduced from 3,000 to 315 in one year

Lifestyle

Enda Walsh says working with Bowie on Broadway hit Lazarus was a ‘ridiculous honour’

Actress Maire Nic Shiubhlaigh played an important role in the Easter Rising

Ask Audrey has been sorting out Cork people for years

Can this humble syrup ward off Alzheimer’s Disease?

More From The Irish Examiner