Saturday 20 January 2018

Liam celebrates his fifth birthday as cement firm gives tonnes of help

Liam Heffernan
Liam Heffernan
John O’Sullivan with Brendan (aged 7) from Tralee giving Susan McGarry of Ecocem Next Generation Cement a lift up with Conor O’Riain, Aidan Doody and Don Whyatt. Photo: Mark Condren

Majella O'Sullivan and Enda Dowling

IT'S his fifth birthday today and little Liam Heffernan is getting a delivery of cement to build a lodge to help sick children.

The youngster is the inspiration behind 'Liam's Lodge' – Ireland's first national respite centre for children with rare and genetic disorders in Blennerville, Co Kerry.

Yesterday, the project was given a huge boost by Dublin-based company Ecocem, which donated 28 tonnes of cement worth around €50,000.

Ecocem director Susan McGarry said they felt they had to help out after hearing Liam's dad Tony, talk about the project.

Kerry haulier John O'Sullivan, with his son Brendan, delivered the cement to Quirke's Quarries in Kerry after emblazoning their 40ft container with

the 'Liam's Lodge' logo.

The €4.5m building project is being driven by Tony and Mary Heffernan, who already lost their daughter Saoirse (5) to Batten Disease, a rare and fatal genetic disorder. It also affects her little brother, Liam.

Saoirse passed away at the family home in Casledrum, Keel, Co Kerry in January 201

Mr Heffernan hopes to be breaking ground by the end of the year but he's looking for help.

Up to 8pc of Irish people are affected by a rare disease. About 70pc are children, from which 30pc will die before reaching their fifth birthday.

Latest figures show that over 200,000 children are affected by rare disease in Ireland and there are no dedicated respite services available.

Liam's Lodge will provide their families with full respite care services and comprehensive care plans delivered by highly trained medical and care personnel.

It will also deliver accredited training courses for medical and care staff involved in rare and genetic disorders.

"We still have to get the word out there that this is a huge facility, the first ever of its kind. Liam's Lodge is not just about giving the family the break. We also want to be a source of up-to-date information and provide training packages," Mr Heffernan said.

And as Liam celebrated his birthday, his parents were making the most of the time they have with him.

"He's happy enough in his daily life but he has deteriorated significantly in the last six to eight weeks and his care needs are increasing drastically," he added.

"As a family we try to pull it together and try to do as much as we can for him."

Mr Heffernan puts Liam's happiness down to his wife Mary, who he said has surrounded Liam in a "magical bubble".

"She's the most amazing woman and mother and she has promised to develop this magic bubble in the lodge for all the kids," he said. It is hoped that 'Liam's Lodge' will welcome its first families in 2015, initially catering for 520 families each year and increasing to 1,560 when fully built.

See www.liamslodge.com or follow the project on Facebook and Twitter, @liamslodge

Irish Independent

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