PLEASE HELP ME GIVE MY DAUGHTER A VOICE BEFORE IT’S TOO LATE.

My name is Sylvia. I’m a mother living in the Hunter Valley, NSW, and I’m publicly asking for help because I am terrified that the healthcare system is failing my nine-year-old daughter, Madison.

I don’t want my daughter’s name to become associated with a tragedy that is only investigated after she dies. I want someone to listen while there is still time.

Madison, affectionately known as Madi, is autistic, has significant communication difficulties and has been experiencing increasingly frequent, frightening seizures.

She may struggle to communicate verbally, but that does NOT mean she cannot communicate her pain, fear or suffering.

She deserves a voice. And I am determined to be that voice.

YESTERDAY, I THOUGHT I WAS WATCHING MY DAUGHTER DIE.

On Friday, 30 October, Madison experienced another prolonged seizure lasting approximately 25 minutes, while I was driving with both my daughters.

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.

I was on the highway, speaking to Triple Zero, desperately trying to support her head and reach somewhere I knew help was available.

My four-year-old, Fiadh, was in the back seat witnessing her big sister deteriorate.

At her pediatric appointment, that morning I had once again requested emergency rescue midazolam. Once again, it was declined. I was told to dump Rivotril medication that an ED doctor prescribed.

Yet when Madison was deteriorating yesterday, that was the medication I still had available.

I administered the previously prescribed Rivotril, and approximately five minutes later, her seizure broke.

We live approximately an hour from Maitland Hospital. My partner works long hours in the mines. We are a one income family, not by choice, but because of the level of care Madi needs every day. Dylan works incredibly hard, often six days a week, 12 hour shifts, to support us without government funding or NDIS assistance. When emergencies happen and he needs to leave work, we lose wages. Despite his demanding schedule, he has also completed his training and volunteers with the Rural Fire Service. I have been begging for a safe, written emergency seizure management plan and appropriate rescue medication for months.

• 29 April 2024: Madison experienced a major seizure at John Hunter Hospital, with loss of consciousness, abnormal breathing and the need for assisted ventilation.

• 17 July 2026: Another prolonged seizure lasting over 20 minutes. She required emergency seizure medication, breathing assistance and hospital transfer.

• 22 July: Further seizure-like episodes requiring emergency assessment.

• 17 September: Numerous episodes involving altered awareness, staring, lip smacking, abnormal eye movements and changes in speech and behaviour. An ED doctor at Singleton prescribed clonazepam for seizure clusters.

• Throughout October: I have witnessed days with more than 20 suspected focal seizures or seizure-like episodes, confusion, distress, gagging, sensitivity to light, changes in breathing and periods where she appears not to recognise or respond to me.

21–22 October — John Hunter Hospital.

While sleeping, I observed her heart rate reach 165 beats per minute and her blood pressure was recorded at 130/80. Discharged within 2 hrs.

I stayed for 3 hours after discharge trying to get REACH to help me I called since I left the hospital to ask for help I left a message no response.

Wednesday, 28 October: Called 000 took over 35 mins for Ambulance her Oxygen was 91 and it had dropped to 73.

This morning, we discovered that Madison’s previous specialist referral for neurology and ENT both have been declined without us being notified despite all of the hospital admissions there was not even an active referral in place. A new referral was only submitted yesterday.

Meanwhile, Madison has been experiencing ongoing nasal pain, gagging and significant distress. Imaging in July identified enlarged adenoids affecting her airway. I am concerned she put something like a dried chickpea or something up her nose.

Her MRI is not scheduled until February 2027.

TO THE INCREDIBLE PEOPLE OF HUNTLEE — THANK YOU!

To the team at Piggott’s, the paramedic, the doctor and everyone from Huntlee who stepped forward — THANK YOU.

WHAT I AM ASKING FOR NOW.

I need 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.

Please help me get my daughter the care she needs.

If you know a paediatric epilepsy specialist, an organisation that can advocate for us, or someone who can help bring attention to Madison’s situation, please reach out.

Non-speaking children deserve to be heard. Disabled children deserve to be believed. Every child deserves safe medical treatment.

PLEASE SHARE FOR MADI.

#MadisonsVoice #EpilepsyAwareness #DisabilityAdvocacy #HunterValley #NewcastleNSW #PatientSafety #EveryChildDeservesAVoice