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

Email Updates

Receive our lunchtime briefing straight to your inbox

More in this Section

Mum of four says bionic hand has transformed her life

Even locals are refused planning in Kerry

Electronic tag was left on dead inmate

Children’s hospice wants plan on care close to home


Breaking Stories

Man arrested in connection with robbery where staff were threatened with hammer

Irish man found dead in Algarve

Hopes of 'sustainable future' for Bus Éireann as unions vote to accept pay cuts

Tusla launches new system that aims to 'hear the voices of children and families'

Lifestyle

Hugh Cornwell says music needs something to lash out against

Why does almost every female character on TV have the same perfect locks?

Pre-eclampsia - the condition that kills 100,000 pregnant women and 500,000 babies every year globally

Gorse fires wreaking havoc on forgotten plants and animals

More From The Irish Examiner