JAMES JOHN (JJ) RYAN was four in September.
A premature baby, he was born with a hole in his heart and chronic lung problems. A brain bleed at birth left him suffering from quadriplegic cerebral palsy, profoundly deaf and unable to speak.
Up to his birthday on September 12, JJ and his family, from Scallagheen in Tipperary town, received support from the Jack and Jill Foundation.
However, JJ’s age means he is no longer eligible for this care.
The family and the charity hoped the HSE would step in. However, despite repeated letters, officials said they cannot provide 8.5 hours of home care help a week costing less than €300.
Because JJ’s case is not deemed serious enough, the HSE said it can only provide three hours of home care help a week and respite care, which he is rarely well enough to access. As a result, the Jack and Jill Foundation is still supporting JJ, despite not being funded to do so.
JJ’s father, James, said the problem was that the HSE only saw his son as a statistic — an extra cost at a time of unprecedented cutbacks.
“The people making these decisions don’t see that at the end of the line is a child, a human being,” said the 45-year-old hotel porter.
“They’ll all retire on their pensions when this is done, but we’ll still need help.
“When JJ gets sick he goes down very quickly. Last Christmas he was in hospital, he’s been in the Mid-Western [Regional Hospital] in Limerick nine times this year, the longest for two weeks. We’ve asked for any help, but then we get letters back.”
The tragic case does not just involve JJ. His father works irregular night shifts — up to nine in a row — in Limerick, meaning he is either travelling or working 12 hours a day.
Despite having epilepsy, which prevents him from driving, the HSE will not provide James with a free travel card. He gets by on an average of four hours of sleep.
James and Michelle Ryan pictured in their home in Tipperary Town with their children, Ciara, and twins JJ and Lucy.
Picture: Dan Linehan
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