A LIMERICK family whose sick baby daughter will spend months in a British hospital for treatment are facing a €20,000 fundraising battle for their heart-breaking trip.
Little Orlaith Geoghegan was born last November but after three months of tests it was found that she was suffering from the rare disease, Congenital Hyperinsulinism (CHI).
Unfortunately there is no treatment available in Ireland and so she must travel to London’s Great Ormond Street Hospital.
Parents Martin and Jackie Geoghegan now need help to be able to afford to stay with her here – and so the couple’s friends have set up the Baby Orlaith Geoghegan Support Fund in a bid to help raise the vital cash.
The family hope to travel to London this month.
The HSE, Ireland’s health board, will pay for baby Orlaith’s treatment but this does not extend to the costs for one or both of her parents to be with her in London.
Transport to and from the hospital, a place to stay and food all have to be considered while Orlaith receives her treatment.
“Our main aim is to unite the mother with the child while she is in London,” explained Gerard Reidy, chairman of the Baby Orlaith Geoghegan Support Fund. “We started off three weeks ago and it’s been going great so far.”
Last November Baby Orlaith Geoghegan was delivered by Caesarean section but it was less than an hour later when the family’s nightmare began.
“My wife was in the recovery room and Orlaith was in with her so I went to feed Orlaith with a bottle and the nurse in the room noticed that she was a bit off colour so did a blood test,” said dad Martin, who works for the Shannon Foynes Port Company.
The test showed that Orlaith’s blood sugar levels were low and as a result she spent the next few weeks in hospital as doctors tried to figure out what was wrong, eventually diagnosing CHI, which effects just one in every 40,000-50,000 births.
“She’s on three different types of medicine – injections and oral medication,” said Martin.
“Her blood sugar levels have to be monitored every four hours, she’s on one medication every eight hours, another every 12 hours – it’s very full on.”
The couple, who are based in Kilcolman and are also parents to two-year-old Saoirse, have been trying to dealing with the illness one day at a time.
Orlaith needs 24 hour care and so mum Jackie, who works for the Brothers of Charity in Foynes, has taken a break to be Orlaith’s full time carer.
A benefit night will be held in Limerick on May 16 where ticket sales have so far raised €10,000.
But the family needs twice that to allow them to stay in London while Orlaith undergoes treatment.
“If there’s any money left over it after we sort out the family, it will go straight into a charity for CHI,” said Mr Reidy, chairman of the Fund.
“What they are doing for us, we will never be able to repay them,” added dad Martin.
To donate to the Baby Orlaith Geoghegan Support Fund, contact Gerard Reidy on 00 353 87 258 2963 or call us James Mulhall at The Irish Post on 020 8900 4354 | email: james.mulhall@http://http://irishpost.co.uk
What is Congenital Hyperinsulinism (CHI)?
In CHI, the beta-cells release insulin inappropriately all the time and insulin secretion is not regulated by the blood glucose level.
The action of insulin causes hyperinsulinaemic hypoglycaemia.
High insulin levels prevent ketone bodies being made.
This means that the brain is not only deprived of its most important fuel (glucose), but also ketone bodies which are used as alternative fuels.
It effects around 1 in every 40,000-50,000 children at birth.
Children with CHI must be monitored and attend check-ups regularly.
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