‘It’s like an exclusive club that no family wants to be part of’

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Children’s hospice offers respite from the fear, exhaustion and isolation of parenting a child in need of palliative care

. It also meant that they felt Jake was stable enough for them to use hospice care at LauraLynn House in south Dublin, which “was just a godsend”, says Andrea, who recalls how nervous she was the first time.

“He is just so happy and pleasant and laughs all the time. He’s just a little monkey. He has definitely changed the house profoundly. His older brother and sister don’t really remember a time when he wasn’t here.” “So often they are stuck in the background and they never complain,” she says of Aoibhín and Joseph, now aged 14 and 12. “They have had to cancel so many things because Jake has been sick on the day. They get so used to everything revolving around Jake’s schedule.

Andrea thinks he might have picked the infection up on a family outing to the Wild Lights at Dublin Zoo, which they thought would be relatively safe, being outdoors. “You are caught between a rock and a hard place. You don’t want to cloister him too much, so that he doesn’t have any life experiences.”The Smiths are just one of several thousand families in Ireland who care around the clock at home for a child with a life-limiting condition.

Every stay in LauraLynn will have therapeutic benefits, says O’Donoghue, but she believes the “family camps”, where four or five families are matched for a programme of sessions and outings, bring “an extra charge of energy”. The peer connection, for parents, siblings and the affected child, is “massive”.

 

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