herald

Monday 18 December 2017

'Please let son spend final days at home'

The heartbroken parents of a baby boy with a rare terminal condition have appealed for help so they can allow him spend his final days at home.

Dee Cairns (30) and fiancé Richard Toner (32), who live in Clonsilla have been told their 11-month-old son Conor "will not see" his second birthday.

"He will never get to go to school and never get to wear his first shoes," said his heart-broken mother.

Conor is their only child and has been diagnosed with Gaucher's disease which is a rare but fatal genetic condition.

"We are devastated and every day we have with him is precious," said Dee from Temple Street Children's Hospital where Conor has been cared for since he became very ill just over a month ago.

Up until a few weeks ago there was no indication he had any serious illness.

"There was a question over his weight, at six months he was below the average weight by a few pounds. I was giving him the best of everything, organic food and low fat milk. Then I changed to full fat but it didn't help," Dee said.

Conor lost more weight and was dehydrated so he was admitted to Temple Street and a consultant told them his spleen and liver were enlarged.

He was diagnosed with epilepsy and blood tests and DNA tests were ordered. The DNA tests diagnosed Gaucher's and the couple says it is so rare that is it 10 years since the last child was diagnosed in Ireland.

He now needs 24 hour care but his family have been assured "he is not in distress and it is not hurting him."

The Jack and Gill Foundation supply a specialist nurse for two nights, and the couple are fund raising for the other five.

Special events are being organised to raise an initial €20,000. Details how to donate are on the 'Bring Baby Conor Home' Facebook page.

hnews@herald.ie

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