Sylvia O’Riordan has already lost one daughter to microvillus inclusion disease (MID), which prevents nutrients being absorbed by the gut.
She and husband Eddie lost their 13-month-old daughter Hollie 11 years ago and her remaining daughter Lexie, 4, also has the disease. She is the only recorded case of MID in Ireland.
Lexie has to be intravenously fed nutrients through a drip which takes her parents up to 90 minutes to assemble each night. She remains on it for up to 16 hours at a time.
“If the current treatment fails her, which happened to Hollie, she may have to initially undergo a small bowel transplant, but it could end up with multiple transplants of spleen, pancreas, stomach, liver, and intestine,” said Eddie.
Lexie has travelled twice to the Lady Diana Children’s Hospital in Birmingham to be assessed for multiple organ transplant in case her liver fails.
The couple and Lexie have had to make more than 30 visits to Temple Street and Crumlin hospitals.
“We had a six-month fight to get her a medical card. I had to give up my job and I can’t get what I should be entitled to [Carer’s Allowance]. You’re fighting all the time to get what should be your rights. There are many other families like us and they shouldn’t be treated that way,” said Sylvia.
It has cost the couple, who live in Ballyvolane, Co Cork, a small fortune to travel to hospital appointments as they often have to pay for two or three nights’ accommodation at a time.
Eddie is working all the hours he can as a general operative in a pharmaceutical company just to keep a roof over their heads.
Yesterday the Naval Service provided the family with a financial lifeline, which they received when they were invited to be guests of honour at a recruits’ passing out parade at Haulbowline.
“The recruits just contacted us out of the blue and asked if they could help. They raised more than €6,000 from a row-athon. We’re just overwhelmed by their generosity. It will be put into a special account for Lexie which is run by a committee,” said Sylvia.
Yesterday’s passing out parade was the culmination of five months’ training for the 39 members of recruit class Sweeney.
It included weapons training, foot drill, arms drill, navigational training, medical training, and, of course, seamanship.
The class was named after Ted Sweeney, the Irish Coast Guardsman and Blacksod lighthouse keeper who, on June 3, 1944, delivered a weather forecast by telephone from Mayo’s most westerly point.
The report convinced General Dwight D Eisenhower to delay the D-Day invasion for 24 hours, potentially averting a military disaster and changing the course of the Second World War.
Ted’s son Edward attended the event yesterday.