When Wicklow mother Cliona Dunne wrote an open letter about her son Alex, she was at her wits' end.
Writing that she wasn't one to ask for her, she explained that she had given everything, physically and mentally, to the care of her son – who has a rare genetic condition – and was now in need of help.
Cliona joined Jennifer Zamparelli on RTÉ 2fm, along with Alex and her husband Dave, to discuss what led her to writing the letter.
Alex has two specific rare genetic deletions, and is the only person in the world with them, which makes finding the best care for him challenging. Dave tells Jen that the couple had doctors telling them they didn't know what would come next for their son, leaving them in a terrifying position.
"We just went, what do we do as parents?" Dave says.
The couple had had a "perfect" pregnancy and delivery, Cliona says. Seven weeks after bringing him home from the hospital the country went into lockdown, and the couple started homeschooling their two other children, Ryan and Ella, while caring for Alex.
"He just didn't make milestones", she says. "He wasn't rolling, he wasn't sitting."
Cliona rang their GP, who said he would be fine, "he was just going to be a lazy baby". Still, she knew something was different, she says.
The couple followed up with doctors, "and from there it was just bad news after bad news".
Alex was initially diagnosed with global developmental delay, and after sending bloods off to find a clearer diagnosis they found he had two genetic deletions.
"We don't know if he knows us", Cliona says. "We don't know if he knows Ryan and Ella. We hope, pray, that he does. He can't walk, he can crawl. He'll be three in January so he needs help for everything. He's still in nappies, he needs to be fed."
Alex is also non-verbal, so his parents don't know if or when he's in pain.
Cliona says getting this news was "devastating". "Because of Covid I had to hear the news myself, so I went into Temple Street and I had Alex on my knee. I had the doctor across from me, and in five minutes, with Alex sitting on my knee, my whole world collapsed."
Cliona was told he had significant brain damage, and that he may never walk or talk. "The grief is unbelievable. As a mum yourself, your kids are your everything, and he is my everything, the same as my other two kids, but he needs help and I'm determined to get it for him."
Cliona says that while there's no instruction book to be a mum, there's certainly none for being a special needs mum. She calls it "so lonely".
They had followed up with Enable Ireland, but since the HSE took the charity over there have been changes to the services. The couple are seeking private therapies for Alex, and as he will be with them for the rest of their lives they need to adapt their home to be accessible for him.
The couple note that there simply isn't enough staff to give Alex the care he needs, which makes it especially difficult to help him regain skills that he may lose. This is why Cliona wrote the open letter and started a GoFundMe page for his care.
"He deserves the same as any other human", Cliona says.
To listen to the full interview, click the link above.
If you have been affected by issues raised in this story, please visit: www.rte.ie/helplines.
