The country’s only hospice for children has voiced concerns that cuts in funding from the HSE will affect the services it provides.
The Laura Lynn House, which is based at the Children’s Sunshine Home in Leopardstown, Co Dublin, says it needs almost €1.4m this year to maintain its existing level of care.
The charity’s CEO, Philomena Dunne, said the hospice had “hit a wall” and was facing an annual shortfall of €1.37m, despite no significant reduction in money raised through fundraising activity in recent years.
Ms Dunne said its annual HSE funding of about €800,000 for the Laura Lynn House had fallen by 16%. The €5.5m centre opened last September and was built without any funding from the State.
Ms Dunne said that the charity’s financial position meant it was also unable to roll out planned services around the country to meet the needs of very sick children.
It is estimated that 1,400 children at any one time in Ireland are suffering from a life-limiting or life-threatening condition.
However, Ms Dunne said that figure was likely to increase significantly in the coming years due to the country’s rising young population.
She said there were also a growing number of children with complex health problems who would not have survived birth in the past.
In an impassioned plea for help, Ms Dunne said the families of sick children were too busy looking after them to have time to lobby politicians for help.
“These children are never going to vote. They are never going to reach adulthood or even go to school.”
John McWade, whose six-month-old son Leo has an inoperable heart condition, said he and his wife Catherine were unable to hold their son following his birth because it caused him so much distress.
Mr McWade recalled how he experienced the worst moment of his life when doctors told him they could not do anything for Leo when he had difficulty with his breathing.
However, as a result of being taken into care by the Laura Lynn House in February, Mr McWade said they could now hold Leo, while he is also able to play with his twin sister Molly.
He said they would be marking six months with Leo next Tuesday when they were originally told he would only survive days or weeks.
Leo has survived eight episodes where his breathing and heart had stopped.
“He wouldn’t be here if he was still at home,” said Mr McWade. “We would never have forgiven ourselves if he had died in distress at home.”
He criticised the “waste, lethargy, and disorganised chaos” he had seen within the HSE, which only cared “about numbers”.
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