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Dublin: 20 °C Saturday 24 August, 2019
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Children's Hospice Week: 'We get 15 days of respite a year - it's the only time we have together'

Cian Murphy has been attending LauraLynn Children’s Hospice – and charming the nurses there – since 2013.

Image: SON Photographic Ltd

FAMILIES ACROSS THE country with children who have life-limiting conditions are asking people to donate to children’s hospice services this week so that people like them can continue to benefit from their support.

Orla Murphy’s son Cian, who is seven-years-old, has been attending LauraLynn Children’s Hospice in Dublin since 2013. Cian has multiple system problems and he can become seriously ill very quickly. He is tube fed and requires multiple medications at different times of the day.

“He could be really good this week and next week he could be in hospital,” his mother told TheJournal.ie. “If he got a tummy bug he could go into crisis.

“We’ve never said to him that he has a life-limiting condition, but he does. We don’t know how long we’ll have him, we didn’t think he’d make it to seven.”

Her son needs round the clock care so the 15 days a year respite that Orla and her husband Eric get from LauraLynn gives them a much-needed break.

Cian is non-verbal but can communicate using sign language and Orla said he has a great relationship with the nurses at the hospice, who know him well and are aware of his complex healthcare needs.

“He’ll be walking around asking the girls their birthdays – he has this bizarre talent that if you tell him what date your birthday is he can say what day of the week it falls on. And he remembers all their birthdays, he has an amazing memory for dates. He helps them with the laundry as well.

“And we can pop in and out, but he doesn’t really want us there most of the time, so I get to spend some time with my husband and with our other child, plus I don’t have to do all the meds.

“He’s a great little man but he is complex and he needs to be watched, even at night to make sure he doesn’t spike a temperature because he could get very unwell.”

The Murphy family travel to Dublin from Limerick every couple of months to stay at the hospice, usually for three days, and there are parent rooms on site so they do not have the expense of a Dublin hotel during that time.

Those 15 days represent the only respite that Orla and Eric get. They are currently trying to get some respite time from the HSE in Limerick, so they can go for the occasional meal together.

“Everything in the HSE you have to fight for, you don’t get it just because you need it. Unfortunately, having a child with a life limiting condition is a constant fight – and it’s stressful anyway.

If we didn’t have LauraLynn I just don’t know, it’s the only time we get to be together just us. And when you go in there you don’t have to pretend everything is wonderful. It’s okay to say ‘I’m having a tough day and I’m sick of the constant meds and the late nights, and you don’t have to feel like a horrible person, you’re just being honest’.

This week is Children’s Hospice Week, with events over the next five days to raise awareness for the services offered to families like the Murphys.

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