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.
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