State's first hospice for children 'just a godsend'

GLADYS AKOGNON wishes she had something she could donate to the LauraLynn Hospice Foundation, where her daughter Grace (2) has been coming for respite care since January.

Grace was born – at 33 weeks – in Dublin’s National Maternity Hospital at Holles Street and was so premature she was unable to suck or swallow, and developed breathing problems. Gladys recounted her daughter’s experience at the official opening in Leopardstown yesterday of LauraLynn House, the first children’s hospice in the State.

“She now has a feeding peg into her stomach, and she had a tracheostomy, so she breathes through a tube in her throat. She needs 24-hour care because if she stops breathing the tube has to be cleaned and changed.”

As an asylum seeker from Benin, she and Grace are living in Balseskin reception centre in north Dublin, where meals are provided and she gets a social welfare payment of €19 a week for herself and €9 for Grace. She is not entitled to Child Benefit, though she gets €75 every six months to buy clothes.

“I have no help in Balseskin so I was so stressed and so tired. My hair was falling out.”

A doctor in Temple Street hospital recommended she get respite and so Grace now comes to LauraLynn House “a few days every month”.

“It is so important to me. I just get time to sleep. It really helps.”

The hospice will provide end-of-life care to terminally ill children and also respite for children with life-limiting conditions. It has received no grant aid from any Government agency towards the €5.5 million costs of its construction and fit-out, and will be managed by Children’s Sunshine Home.

Some 350 children die in Ireland annually and there are 1,400 children with conditions from which they will die prematurely.

Named after sisters Laura and Lynn McKenna, the house is the culmination of seven years’ fundraising by their parents, Jane and Brendan McKenna. Their daughter Laura was born with a heart defect and died, aged four, in 1999.

Lynn was diagnosed with leukaemia the same day her sister died. She died in 2001 aged 15.

Also at yesterday’s event was Alan McClune, whose son Ben (3) has life-limiting epilepsy.

“He can’t eat, walk or talk. He’s on a lot of drugs and he needs 24-hour care. We get very little support. We get some from the Jack and Jill Foundation but that will end when he is four.

So being able to come here is just a godsend.”