Thursday 20 June 2019

'It's not like a hospital, it's full of fun' - hospice opens fundraiser

Family appeal: Alex (centre) with (from left) Dillon, Megan, dad Michael, mum Mags, Adam and Caoimhe. Photo: Dylan Vaughan
Family appeal: Alex (centre) with (from left) Dillon, Megan, dad Michael, mum Mags, Adam and Caoimhe. Photo: Dylan Vaughan
Eilish O'Regan

Eilish O'Regan

Life is a challenge for young Alex Butler who has cerebral palsy and cannot swallow, walk or talk.

But he loves music and his devoted family, who lavish him with care every day, are happy the kind staff in his second home, the LauraLynn Children's Hospice, indulge his simple pleasure and make his stay an uplifting experience.

Alex (7) from Co Tipperary is one of hundreds of children who have been looked after by the hospice, which this week launches its annual drive to raise over €4m.

His mother Mags Butler said the hospice, which provides them with 15 nights of respite every year for Alex, is a vital lifeline for the family.

"Alex loves his time there. It's not like a hospital. It's full of fun," she explained.

The youngster survived against the odds along with his twin Adam after they were born prematurely at 28 weeks.

Alex has a range of disabilities and requires round the clock care, with nurses from the HSE coming to the home several nights a week. Besides cerebral palsy he is also suffers from epilepsy. Alex is also non-verbal and must be tube fed.

The family first encountered the LauraLynn hospice team when Alex was admitted for three months to Temple Street Children's Hospital.

The hospice sent staff to sit with him so his family, who were constantly at his bedside, could get some fresh air.

"When Alex came home the hospice, homecare team came to us twice a week," said Mags.

The 15 nights a year respite mean the family know if they go on a week's holiday, Alex is in good hands.

Apart from twin Adam, he also has a big brother Dylan (18) and sisters Caoimhe (16) and Megan (12).

There is a special bond between the twins and Alex is visibly happier when Adam is nearby, said his family.

Adam senses when Alex needs him and will hold his hand, or give him a little squeeze.

Orla O'Brien, chief executive of LauraLynn, said: "This year alone LauraLynn requires €5m to maintain services, of which €4.3m must be raised through fundraising efforts."

Irish Independent

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