Five year-old Darach, the son of artist Sheila MacNally and Colm Mac Con Iomaire - violinist with the well-known Irish band The Frames - was diagnosed with Fragile X at the age of two and a half.
"Darach was eventually diagnosed with Fragile X after I pushed for a referral for assessment," she says. "We had no idea at that stage that something was really 'wrong' and were shocked by the diagnosis.
"Since then, we've learnt to adapt to the condition and almost forget the state of high alert that we live in to avoid certain situations from getting out of hand.
"Despite reassurances from the local early intervention co-ordinator that Darach was entitled to much-needed speech, occupational and physical therapy, shockingly long waiting lists have meant that it was over two and a half years before he received any speech or occupational therapy.
"Although Darach is a happy and cheerful young boy, certain situations can make him extremely anxious. For instance, if someone makes direct eye contact or is very friendly to him, he'll retreat to a safe distance until he regains his composure, or lie on the floor.
"Breaking a routine of any sort can also cause great stress. When his dad goes away on tour with the band, for example, Darach's anxiety will manifest itself in a lack of communication or tantrums. He can also become overwhelmed when he gets excited: for instance, he loves horse- riding and I've seen him on several occasions collapse hysterically on the ground crying and overcome with excitement when he approaches a horse.
"Darach needs the security of routines, especially at mealtimes, and when 5pm approaches, he'll start getting the plates and cutlery out and will sit at the table.
"A big problem for Darach is that unless he's very comfortable and relaxed, his speech will be incomprehensible. At home, when he's calm, he's able to hold a conversation but when he's outside of his comfort zone, few people would realise that he has any words at all.
"As a parent, you learn to develop coping mechanisms to deal with hyperarousal outbursts and advice from other parents in the same situation is invaluable.
"However, there's a huge need for greater awareness of and support for the condition, especially as children get older and you can no longer resort to strategies such as lifting or holding them when they become anxious or overwhelmed."