Mum of boy with debilitating condition denied SNA says she is 'not giving up without fight'
Melissa Mahon (39 from Dunsany), says she is 'not giving up without a fight' for her son Kian (5), who was born with a rare and incurable condition that has left him incontinent and reliant on help when going to the toilet.
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Kian is due to start school at Dunsany National School at the end of August, but his application for access to a Special Needs Assistant (SNA) was denied last year.
His family has spent months appealing the decision through the National Council for Special Education (NCSE), but with just weeks to go, they still do not know if the appeal has been successful.
'We have done everything, and I'm not giving up without a fight for him, because he's just been to hell and back," said Melissa. "The hospital has said that we've kept him alive for five and a half years. We just need that little bit of help to go to school, because he deserves an education, and we really want him to be a normal little boy.'
Melissa warns that even if the NCSE grants the SNA now, it may already be too late.
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'Kian is incontinent and needs help going to the toilet but he doesn't know the person who might be assisting him with this. It's a deeply personal and sensitive thing for a little boy,' she explained.
'You can't just parachute someone in last minute and expect a child with complex needs to be okay with it. We've been asking for help for over a year and now we're staring down the first day of school with no plan in place.
'If the SNA doesn't come through, I'll have to be on standby to come into the school myself. That's not sustainable, and it's not fair on him or the teachers.'
Despite his medical needs, Melissa says Kian is a bright, outgoing child who is desperate to start school like all his friends.
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'He's so excited about school. He's been trying on his uniform every other day. But how do we explain to him that no one is going to be there to help him go to the toilet?
'It's the basics. It's about dignity and the system is failing him.'
The NCSE denied the family's original request for SNA hours last year, and while an appeal has been lodged, Melissa says they have been left in complete limbo.
'We've done everything, letters, medical reports, specialist input and we're still in the dark with just weeks to go.'
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Kian was born on in 2020, during the height of the Covid 19 pandemic. But his journey into the world was anything but ordinary.
Before Kian, Melissa suffered six devastating 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 ever becoming parents when, in the summer of 2019, Melissa discovered she was pregnant.
'He was our miracle. After all the heartbreak, we couldn't believe he was really here,' Melissa recalls.
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'He was perfect, but within hours he started vomiting his feeds and hadn't passed a stool. By the next night, he was in intensive care.'
Kian was transferred to Our Lady's Children's Hospital, Crumlin, where a biopsy revealed he had been born with Hirschsprung's disease, a rare congenital condition that affects just 1 in 5,000 babies.
It meant parts of his bowel were missing essential nerve cells, making it impossible for him to pass waste normally.
'We were devastated. After everything we had been through, our miracle baby was now fighting for his life.'
In July 2020, Kian underwent a major pull through surgery to remove the affected part of his bowel. The five hour operation was successful, but the journey was far from over.
Despite the surgery, Kian continued to suffer from dangerous bowel blockages and complications.
In 2022, at just two years old, he became seriously ill after developing severe abdominal pain and vomiting — a result of waste not moving properly through his digestive system.
'He became dangerously sick in 2022. It was a terrifying time,' Melissa said. 'We nearly lost him again. It was at that point the hospital decided to go a different route.'
Doctors injected Botox into his bowel to deliberately induce incontinence , relaxing the muscles enough to allow stool to pass freely without getting trapped.
'That decision saved his life. But it means he's fully incontinent now. It was a medical choice to protect him from something fatal but it has consequences,' Melissa explained.
'That's why he absolutely needs support in school. This isn't something he can control or manage on his own. We didn't choose this for him. It was done to keep him alive.'
Melissa says the emotional toll of Kian's early years and the daily demands of managing his condition have been enormous, but now the biggest battle is against the bureaucracy that is supposed to help children like hers.
'I've already fought to keep him alive. Now I'm having to fight so he can go to school with dignity and support? It's not right.'
'We're not asking for the world. We're asking for one person to help our son go to the toilet.'
In a twist no one saw coming, Melissa and Mark welcomed another miracle baby in 2024 — Ella, now ten months old.
'We never thought we'd be parents once, let alone twice. Ella was a complete surprise. But with a baby at home and Kian needing full time care, it's been overwhelming.'
As the school start date looms, Melissa fears the system has already failed Kian and that no matter what decision the NCSE makes, it will be 'too little, too late.'
'Even if we get the SNA now, there's no time to build the trust Kian needs. A stranger helping him go to the toilet isn't something he can just accept on day one.'
'He's been through more in five years than most adults. But he's never given up. He's a miracle, a fighter, and the happiest child you'll ever meet,' Melissa says.
'He deserves a normal life. He deserves to go to school. He deserves to be treated like every other child. We just need that little bit of help.'
The NCSE and Dunsany NS has been approached for comment.
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