Galway mother 'thought she was watching daughter die' as girl 'fights for life' in Australia

Sylvia O’Connor told Galway Live that her, her partner and her two little girls moved to Australia after years of fighting for basic care in Ireland for their nine-year-old daughter Madison who has Level 3 autism and significant communication difficulties.

The family thought moving down under would give their daughter a better chance at life but sadly her condition has begun to detoriate since the move, suffering as many as five serious seizures this year alone.

At the end of October, Madison experienced another prolonged seizure which lasted around 25 minutes as Sylvia was driving - she said it was so bad that she thought she was watching her daughter die in front of her eyes.

She told Galway Live: “She began coughing, gagging and becoming visibly distressed. Her breathing became increasingly concerning, she was barely responsive, and her head kept falling forward towards her chest.”

The Galway mammy has set up a GoFundMe for Madison since the most recent seizure in the hope of being able to access more specialist care to get to the bottom of it.

“We spent years fighting in Ireland for the most basic care, therapies and services for Madison, who has Level 3 autism and significant communication difficulties. It was a constant battle to get her the support she deserved.

“When we made the decision to move to Australia, we genuinely believed we were giving our daughter a chance at a better life.

“Never in a million years did I think I’d go from fighting for basic services to fighting for my little girl’s life.”

Sylvia continued: “Since July, Madison has been suffering serious, unpredictable seizures. Some have lasted over 20 minutes, leaving her unconscious, requiring emergency medication and assistance to breathe. We’ve endured multiple hospital admissions, terrifying emergencies and moments when I genuinely feared I was going to lose my daughter.

“And yet, despite everything, we’re still fighting to get her the medical care she desperately needs. We’ve been discharged from hospital with no proper follow-up, no one coordinating her care, referrals that haven’t been progressing and no clear plan moving forward.”

Sylvia says her family are physically and emotionally exhausted as she spends every waking hour chasing doctors and medical records.

“My own health is now suffering, and I’m struggling to access medical care for myself while trying to keep my daughter safe. We don’t have the family support network here that we would have back home, and we’re doing everything we possibly can.

“We left Ireland after years of fighting for Madison’s needs. We never imagined we’d find ourselves on the other side of the world fighting to keep her alive. From one Galway mammy to everyone back home, I’m asking you to help me give my little girl the voice she deserves. Madison has a voice. She just needs the world to listen.”

Sylvia says any money raised in the GoFundMe will be put towards urgent paediatric neurology and epilepsy specialist care; a written seizure emergency management plan; an urgent decision about appropriate home rescue medication; ENT assessment; earlier MRI and EEG investigations and someone to coordinate Madison’s ongoing care.

“She is a beautiful nine-year-old girl who is such a sweet gentle soul, a family, a little sister who adores her and her whole life ahead of her.

“I have barely slept in months watching her, caring for her, researching, investigating even sleeping beside her with my hand on her stomach, checking that she is still breathing.

“I am exhausted. I am frightened. But I will not stop fighting for her. Non-speaking children deserve to be heard. Disabled children deserve to be believed. Every child deserves safe medical treatment.”

You can donate to the GoFundMe and find more information here.