Local Dad of children with rare conditions praises support group
As the father of two children who were diagnosed with rare medical conditions in their infancy, Monksland's Robert Carroll knows all about the struggles, challenges and setbacks that can entail.
Robert's daughter Hannah (10) has been undergoing heart surgeries since she was a baby, while Ryan (8) has autism, a heart condition, and a rare chromosome condition called microdeletion.
This Monday, February 28, is Rare Disease Day 2022, an occasion which will be marked locally with the lighting up of Athlone's railway bridge.
Rare Ireland, a support network for families of children with rare conditions, was set up five years ago by Athlone woman Laura Egan and Dubliner Louise O'Keeffe. Around 1,500 families are now part of the group.
Rare Ireland will be arranging for some local families with rare conditions to gather in Athlone for the turning on of the lights on the bridge on Monday.
Speaking to the Westmeath Independent this week, River Village resident Robert Carroll said Rare Ireland had been very beneficial in putting him and his wife Laura in contact with other families in similar circumstances.
"The group is great when you're looking for some information to see if there's another child like your child. People go to (Rare Ireland) to get information because there might not be anywhere else that they can get it," he said.
After Hannah was born in 2011, Robert and Laura explained that their daughter's condition was "pulmonary atresia with VSD and mapcas... Mapcas means major aorta pulmonary collateral arteries, while VSD is a hole in the heart over the pumping chambers."
Elaborating on that diagnosis this week, Robert said it essentially meant that, in addition to the hole in her heart, Hannah had "a blocked artery, and, where the blocked artery was, she formed her own arteries."
When Hannah was about a year old she had "a shunt put in to help the blood flow through her heart," and every year or two since then she has required further surgeries with "stents and balloons" being put in because her arteries don't grow as they should and need to be stretched as she grows.
"That (need for surgery) will carry on until she stops growing. She has a cow's vein in her, where the blocked artery was, which is called a conduit, and they're waiting until she's old enough that they can put in a man-made one," said Robert.
"She had her last (surgery) just before Christmas, where she had stents and a balloon put in again. She might get a year or a year and a half out of that - it all depends on how fast she grows," he said.
Hannah is in fourth class in Cloonakilla National School and attends the children's hospital in Crumlin for check-ups every few months.
"She is on medication for her heart, but once she gets the stents put in her energy levels (increase) and she's in good form while they're working."
Her brother, Ryan, has a chromosome disorder which contributes to "behavioural problems and eating problems."
"He also has low muscle tone, so he wouldn't be able to walk long distances," said Robert. In addition, he has pulmonary stenosis, a narrowing in the arteries, and had to have stents put in a few years ago as a result.
Ryan is in second class in Cloonakilla NS. Robert said his son receives plenty of help and support at school, but outside of school hours there is no assistance available for himself and Laura, or for other parents across Ireland who have children with autism.
"There are no services at the moment for autism. You're left on your own to deal with it," he said. "There is a service in Athenry, but the waiting list got too big and Ryan couldn't get into it. That's the case all over Ireland."
Robert said the situation meant that he ended up doing online courses, with the Armagh-based Middletown Centre for Autism, to try to help his son.
"I had to do those courses just to help myself to learn more about autism, and to help with solutions and things that happen day-to-day with your child on the autism spectrum."
Asked if there's anything in particular that he wanted to highlight in the lead-up to Rare Disease Day, Robert said it would be the need for more autism services and the need to address the lengthy waiting lists in the public health system for children who need to be assessed for autism.
Families with rare conditions who wish to contact Rare Ireland can do so on its Facebook page or on Instagram, and it also launched a new website this week at: rareireland.ie