Taoiseach meets parents of children with rare syndromeWednesday 09 July 2014 23.50
The parents of twins with an extremely rare syndrome met Taoiseach Enda Kenny today in their battle to have the boys cared for at home.
Shay and Finn Guihan are the only twins in Ireland with Pfeiffer Syndrome, which is when the skull plates fuse together too soon.
The two-and-half-year-old boys both each had a tracheostomy to help them breath, which means they need 24/7 care.
A homecare package was approved for the boys in July 2013 and they went home last October.
However, their parents Dermot and Denise, had difficulty with the continuity of the boys' care and had to put them in critical care in January.
Since then the boys have been in the palliative care unit of the LauraLynn Children's Hospice Foundation but their parents want to bring them home.
Today they said their boys' lives are limited and every day with them is precious.
They said a proper homecare package must be put in place.
Ms Guihan said the boys are "pure miracles because after being given three months to live when they were born, they're now two-and-a-half coming on three in October".
She said they are "real fighters, with a real will to live".
Independent TD Catherine Murphy highlighted their plight in the Dáil today, saying it is not about money but about how the process is managed.
She said that while there may be a limit on the time they live, there should not be a limit on the quality of life they have.
The Kildare TD asked if Mr Kenny could intervene with the case so the children can go home.
She also asked for a review of homecare packages.
The Taoiseach said the Health Service Executive is very familiar with the case and it is the most complex case it has come across in a long time.
He said he understands the HSE is willing to meet with the Guihans to ensure that the best possible sustainable package can be put in place.