Two Cavan families are urging people to get behind a cute Christmas calendar in aid of a group helping children born with heart defects.
The Heart Children Ireland 2016 'Trucks & Tiaras’ calendar has been launched following the success of the 2014 and 2015 editions. The calendar is produced by HCI volunteers, Aoife O’Driscoll and her husband, John, who are themselves parents to a four-year-old girl with Congenital Heart Disease (CHD).
Two local children feature in this year’s calendar and The Anglo-Celt caught up with their mammies as they look forward to Christmas with their little ones.
Ballyjamesduff couple Linda and Dary Farrelly are parents to one-year-old little Lily, who was born with congenital heart defects. This is Lily’s second calendar for the Heart Children Ireland (HCI) charity.
“I was very sad,” says mum Linda. “My first reaction was fear - I was terrified. I didn’t know what was ahead of us.
Following a 3D scan during pregnancy, it was detected that Lily had hypoplastic right ventricle - a serious heart defect. “This means that one of the heart’s sides didn’t develop,” explained her mum, adding that family and friends have been a great support.
“We are, I suppose, at the very early stages. Lily is just one-year-old. We don’t know what she will be able to do later... time will tell,” said Linda, adding that Lily is “doing well” at the moment.
So far, Lily is one of the few to have avoided extra open heart surgeries because of the insertion of a balloon into her heart, almost immediately after being born, which allowed it to open up and develop.
“The last appointment that we had was in October when we were to be told that Lily needed open heart surgery if the balloon didn’t work, which they didn’t expect it to. But it has worked. At the moment, we are hoping that she won’t have any procedures for a long time,” Linda explained.
When Lily was born, the Farrellys became members of the HCI charity, who “do wonderful things” for children in hospital including organising Christmas parties.
“They are a fantastic group - they provided the first Echo machine [heart monitoring for children] and they have child psychology services, so when a child has open heart surgery, when they are older they have somebody to talk to.”
Linda added that it is great to have parents in a similar position to talk to “because they have the same story as us”.
Looking forward to Christmas, Linda tells us that Lily’s two big brothers - John (5) and Jacob (3) have asked Santa for presents for Lily and her twin sister Leah, who both turn two in March.
Linda is now looking forward to a full house this Christmas with all her family.
“In the morning, the kids obviously get up very early, because of the toys. Then the family is going to mass to celebrate Christmas.”
Afterwards, they go to Linda’s mum’s house for tea with biscuits where her relations and family will come together.
“The house is absolutely full. There could be about 50-60 people. We are really optimistic, because Lily is doing great. We hope that she continue on the healthy path and that she will have a healthy long life, like all my other children, too.”
'Taking each day as it comes’
Stephanie Lord and her husband John from Crossdoney are parents to eight-year-old James, who has the same condition. They were, at first, “shocked and devastated” at the discovery.
James has been in the calendar since the beginning and this year they wanted to do something different.
“We had a chat with Aoife O’Driscoll about maybe having some of the photos taken at the Pipe Truck Show, which is set up in Cavan in June,” said Stephanie.
So the show partly inspired the theme of the 2016 calendar 'Trucks & Tiaras’.
The Lords too speak highly of the HCI charity and also enjoyed the photoshoot.
The Anglo-Celt asked if James’s condition limits him in any way. “James is not as able to run around or play football or do things like that. He gets very quickly tired. We try to give him the best quality of life as best as we can.
“At school James is getting on good. He is well with the kids and teachers. The teachers are aware of his condition. They are really aware when he needs help, in doing PE and when he needs to take breaks. They are very, very good with keeping an eye on him and keep in touch with me as well.”
The whole family, which also includes Daniel (7), Lilly (3) and Charly (seven months) will all celebrate a relaxed Christmas at home and James is hoping to get a Skylanders game for his Xbox from Santa.
Two weeks ago, the family were in Crumlin hospital and Stephanie explains the doctors were “happy with him and James doesn’t have to come back until January”.
“Next year, we will go to Great Ormond Street [hospital] in London and we are preparing for that at the moment. We still go up and down to Crumlin hospital in Dublin. We are just trying to take each day as it comes and to keep him as well as possible.”
All proceeds to charity
Organiser Aoife O’Driscoll points out that all the money goes directly towards funding the work of HCI, which over the last 25 years, has raised over €2.5m for the cardiac unit in Crumlin Hospital.
The calendar costs €10 and can be purchased online at www.mycharity.ie/event/hci2016cal/