Mum’s despair at further cuts to son’s care

THE mother of a severely disabled Southside boy has told how she has been left high and dry after being offered just four hours’ homecare assistance every week.
Leona Burke (33), from Fortunestown Lane, Tallaght, is the sole carer of her son, who suffers multiple seizures on a weekly basis due to a rare condition he developed at birth known as Wolf Hirschhorn Syndrome. Jamie was also born with a hole in his heart and suffers from severe mobility problems.His homecare had been slashed in half, from 40 hours per month to a mere 20, after the Jack and Jill Foundation, who provided the care, were unable to secure e1.3 million in funding earlier this year.As a result, Leona received no assistance from February, as the charity could not meet increased funding demands.She claimed the HSE had informed her that Jamie was on a priority list for homecare help. However, she revealed she now has just four hours of homecare assistance per week, which came into effect last month.

“The HSE failed to keep me updated on the help Jamie was going to get,

? Leona said.

“I was left in the dark after fighting and fighting for him to get the help that he needs.

“Jamie needs a high level of care,

? Leona explained.

“He is fed through a tube in his stomach and he depends on all the help that he can get from the people around him. His health conditions are endless.”Leona said that despite being promised the four hours’ help per week, she is often told that there are no nurses available. “They promised four hours but sometimes there are no nurses available,

? she said.

“It’s ridiculous.

“How can they say they are going to help Jamie when they are not even sending out a nurse?”Jamie’s condition means that he has to attend a radiologist and neurologist in Tallaght Hospital who monitor conditions such as a heart murmur and delayed physical development.In addition, he attends speech therapy and physiotherapy, despite doubts that he will ever walk or talk. Leona said Jamie has spent a lot of his life in hospital due to his fragile state.

“I can’t praise Jack and Jill enough,

? Leona added.

“They helped me wherever possible but all of a sudden their funding disappeared.

“My entire family would benefit from extra help because I’m in everyday taking care of Jamie.

“It’s becoming desperate at this stage and I’m finding it so difficult to cope. I feel desperate, isolated and I’m just so tired of it all.

?In January of this year, the Jack and Jill Foundation reported a 25 per cent decrease in donations.Carmel Doyle, communications director, said the charity amassed e30 million in the past 14 years to cater to growing demands for homecare assistance.However, increased demands and falling donations had wiped this out.

“We have presented the HSE with a rock solid argument that it would cost the health sector a lot less to allow us to continue with assisting the needs of families,

? she said.

“The HSE has refused to listen to our arguments, which is partly why Jack and Jill faced a massive shortfall in funding.

?A spokesperson for the HSE said they could not comment on individual cases. However, the spokesperson added that a plan is being drawn up to cater for the needs of children in the Tallaght area.