Dunsany Family wins last minute school support for son with rare condition
A Dunsany family is breathing a sigh of relief after being granted vital school support for their five-year-old son just two weeks before he is due to start junior infants.
Melissa Mahon (39) has spent the past year locked in a heart-wrenching battle to secure a Special Needs Assistant (SNA) for her son Kian, who was born with a rare and incurable condition that has left him incontinent and reliant on help when using the toilet.
The family’s original application for an SNA was denied by the National Council for Special Education (NCSE) last year, leaving them in limbo for months as they appealed the decision. With the start of term looming, Melissa had feared the worst.
But in a last-minute breakthrough, the family received the phone call they had been praying for.
“We are just over the moon and so relieved,” said an emotional Melissa. "I couldn't stop crying when I got the news.
“Getting that call was like winning the lottery, a huge weight has been lifted from our shoulders.
"We can now start preparing Kian for school and knowing he will have help is just everything.”
As well as assisting Kian with toileting, the SNA will also play a crucial role in ensuring he stays hydrated throughout the day and closely monitoring his health. Even a common cold or minor bug can quickly escalate and become dangerous for Kian, potentially landing him in intensive care.
The news comes after months of frustration, uncertainty and advocacy. Kian, who was due to start school at Dunsany National School at the end of August without any confirmed assistance, can now look forward to beginning his education with the dignity and support he deserves.
“He’s so excited about school. He’s been trying on his uniform every other day. But now we can finally talk to him about it without worrying that we’re setting him up for a fall,” Melissa said.
Kian was born in 2020 during the height of the Covid-19 pandemic, but his entry into the world was far from straightforward. Melissa had suffered six miscarriages over five years, including one at five months, and had been told she would never conceive again. Diagnosed with Polycystic Ovary Syndrome, she and her partner Mark Gaughan had given up hope of becoming parents.
Then, in the summer of 2019, Melissa found out she was pregnant.
“He was our miracle. After all the heartbreak, we couldn’t believe he was really here,” she recalls.
But joy turned to fear within hours of his birth, as Kian began vomiting his feeds and failed to pass a stool. He was transferred to Our Lady’s Children’s Hospital in Crumlin, where doctors diagnosed him with Hirschsprung’s disease, a rare congenital condition affecting just 1 in 5,000 babies.
The condition meant that sections of Kian’s bowel were missing the nerve cells needed to move waste through the digestive tract.
“We were devastated. After everything we had been through, our miracle baby was now fighting for his life,” Melissa said.
At just weeks old, Kian underwent a major operation to remove the affected part of his bowel. While the surgery was successful, he continued to suffer complications, including dangerous blockages.
In 2022, he became seriously ill again. To prevent future life-threatening episodes, doctors made the difficult decision to inject Botox into Kian’s bowel, relaxing the muscles and intentionally inducing incontinence.
“That decision saved his life. But it means he’s fully incontinent now. It was a medical choice to protect him, not something we ever wanted for him,” said Melissa.
Despite these challenges, Kian has defied the odds. He is described as a bright, social, and cheerful boy who is desperate to start school like his peers.
“He’s been through more in five years than many adults go through in a lifetime, but he’s the happiest child you’ll ever meet,” said Melissa. “He deserves a normal life. He deserves to be treated like every other child. We just needed that little bit of help.”
Melissa says that finally receiving confirmation of SNA support feels like a “massive step forward,” but also underscores how stressful and uncertain the process has been.
“It should never have come to this. We’ve spent months pleading, chasing letters, submitting medical reports, and preparing ourselves for the worst. It’s been emotionally exhausting.”
She also highlighted the importance of early planning when it comes to children with complex needs.
“You can’t just parachute someone in at the last minute and expect it to work. Kian needs time to get to know his SNA, to build trust. This is a deeply personal and sensitive issue for him.”
With just weeks left before school begins, the family is now focusing on preparing Kian emotionally and practically for his big day.
“We can finally tell him that someone will be there to help him. That matters so much. It’s about more than just toileting, it’s about dignity, comfort, and making sure he feels safe and supported.”
In a beautiful twist to their journey, Melissa and Mark welcomed another miracle baby, Ella, in 2024. Now ten months old, Ella’s arrival brought fresh joy into the household but also added to the demands on the family, as they juggled baby care with Kian’s complex medical needs and the battle for school support.
“We never thought we’d be parents once, let alone twice. Ella was a complete surprise. But the past year has been overwhelming, trying to do everything at once.”
Despite the immense challenges, Melissa remains deeply grateful to those who supported the family’s campaign and says she hopes other parents in similar situations will be listened to sooner.
“We shouldn’t have had to fight this hard. There are so many other families out there dealing with similar battles. I just hope our story helps shine a light on what needs to change.”
Melissa also extended her heartfelt thanks to Minister for Education Helen McEntee for helping the family secure the SNA. “We’re incredibly grateful to Minister McEntee for stepping in and supporting us when we needed it most. Her help made all the difference,” she said. "Gillian Toole, TD also reached out to us."
Kian now has the support he needs to start school with confidence, and for Melissa and Mark, that means everything.
“He deserves this chance. Now he’s got it, we can breathe again.”
The NCSE and Dunsany National School were contacted for comment.