Hi, my name is Linda and I am wanting to raise funds to help pay for Zac's much needed jaw surgery. All funds will go directly to medical expenses.

At 24 years old, Zac Ede should be starting his life — planning trips with friends, building a career, and looking toward the future. Instead, he is trapped in a body that has been in a state of medical crisis since he was 11 months old. After 23 years of surgeries and resilience, Zac has reached a breaking point, and he needs our help to bridge the final gap to his recovery.

A Journey Defined by Resilience

Zac’s battle began as a baby in 2002. At just 11 months old, he suddenly lost the ability to crawl or pull himself up. What was first feared to be meningitis turned out to be a 6cm spinal cord tumour (a pilocytic astrocytoma) stretching from his neck to his chest. Zac survived the gruelling surgery and two years of chemotherapy at the Children’s Hospital at Westmead, but the victory came with a heavy price: permanent spinal cord injury and a lifetime of complex health battles.

A Body Under Siege

As Zac grew in adolescence so did the complications. His high school years were not spent playing sports, but dealing with pain spending time with specialists and in hospitals:

● The Halo Traction: In 2018 Zac’s spine began to deteriorate rapidly. In 2019, during his Year 12 HSC, he spent weeks in pre-operative halo traction—a metal brace fixed to the skull—before undergoing a massive surgery to fuse the majority of his spine from T2 to L4.

● The Hardware Failure: In 2024, Zac had to return to surgery after a titanium rod in his back fractured and screws became loose, requiring a complex revision and bone grafts.

In true "Zac style," he never gave up. He is a fighter. He prepared for the HSC from a hospital bed. He worked for a short time as an assistant manager at KFC until his body physically crashed.

The Invisible Battle: Beyond the Scars

Zac doesn't just fight the "big" surgeries; he fights a daily, invisible war within his own nervous system. Due to his spinal cord injury and the trauma his body has endured, Zac lives with:

● Neurological Storms: Severe chronic fatigue, "brain fog," and debilitating migraines.

● Autonomic Dysfunction: His body cannot regulate its own temperature, leading to drenching night sweats.

● Physical Fragility: He battles Osteopenia (low bone density), which makes every spinal surgery and recovery period significantly more dangerous.

● Chronic Systemic Pain: A permanent "twist" in his body makes it impossible to sit comfortably or even lay flat in bed.

The Final Hurdle: The Jaw Surgery

Despite the successful spinal repairs, Zac cannot heal because his body is starving and exhausted. Zac has a severe jaw deformity that has reached a critical stage:

1. He cannot sleep: He has obstructive sleep apnoea, but because of his jaw misalignment, CPAP machines cannot form a seal. He is severely sleep-deprived, and a body that cannot sleep cannot heal from spinal surgery.

2. He cannot eat: His jaw and teeth do not line up. It is painful to chew, he suffers from an excessive gag reflex, and he is dangerously

underweight.

3. The Solution: Specialists have confirmed he needs Bimaxillary Orthognathic Surgery to reposition his jaw, allowing him to breathe and eat.

Zac Ede: A Detailed Medical History & Timeline

This document provides a comprehensive overview of the medical challenges Zac has faced from infancy to the present day. It serves as a testament to his strength and a clinical justification for the urgent surgery he now requires.

2002 | The First Chapter: Survival

At just 11 months old, Zac’s life changed overnight. He suddenly lost the ability to pull himself up or crawl, and his left side became weak. While doctors initially suspected meningitis, an MRI revealed a life-threatening 6cm pilocytic astrocytoma—a large spinal cord tumour spanning the cervicothoracic spine (C3 to T3). The tumour was so expansive that only a tiny rim of the spinal cord remained visible.

Zac underwent major surgery to remove the tumour, followed by two years of chemotherapy at the Children’s Hospital at Westmead. Despite enduring repeated central line infections, Zac survived. However, the battle left him with a permanent spinal cord injury and a lifetime of complex neurological sequelae.

2008–2009 | Upper Limb Challenges

By age six, the nerve damage to Zac's left side became a primary focus. He underwent multiple tendon transfer surgeries on his left hand to try and restore function. Unfortunately, these procedures were unsuccessful. Years later, specialists at Royal North Shore Hospital confirmed that no further surgical options were available for his hand. Despite this devastating news, Zac maintained his trademark wit, holding out hope for "bionic hands" in the future.

2019 | Adolescence and Spinal Crisis

As Zac grew, the stress on his compromised nervous system intensified. By age 17—his final year of high school—his spine began to deteriorate rapidly. The complexity of his case was so significant that local surgeons sought international counsel. Zac was presented at an international meeting in Sydney, where a global panel of top spinal

surgeons collaborated to create a surgical plan. Before the procedure, Zac spent weeks in pre-operative halo traction to stabilize and protect his spinal cord. The subsequent surgery fused his spine from T2 to L4. Throughout this ordeal, Zac remained an absolute champion, completing his Year 12 HSC from his hospital bed.

2020–2021 | The Systemic "Crash"

Following a brief period of stability, Zac’s health took a sharp downturn. He began experiencing a cascade of systemic issues:

● Neurological Symptoms: Severe chronic pain, extreme fatigue, migraines, and "brain fog."

● Autonomic Dysfunction: Inability to regulate body temperature, drenching night sweats, and persistent nausea leading to weight loss.

● Structural Agony: His back pain intensified, accompanied by audible "creaking and grinding" sounds within his body. A permanent spinal "twist" made it impossible for him to sit in any chair or lay flat, as his lower back and hip would hover above the mattress.

This physical and mental "crash" in February 2021 forced Zac to resign from his management role at KFC and, eventually, his delivery work.

2022–2023 | Hardware Failure and Airway Obstruction

In June 2022, a CT scan confirmed hardware failure: a titanium rod had fractured at the L3/4 level of his lumbar spine. Simultaneously, Zac was diagnosed with Obstructive Sleep Apnoea.

Despite working with sleep clinics and specialists, it was discovered that Zac’s jaw deformity made CPAP treatment impossible. By December 2023, Dr. Lydia Lim (Oral & Maxillofacial

Surgeon) confirmed a severe skeletal malocclusion and mandibular asymmetry. Zac’s jaw had become so misaligned that he could no longer chew properly, his teeth were chipping, and he suffered from an excessive gag reflex because his tongue could no longer reach the roof of his mouth.

2024 | Spinal Revision

In May 2024, Zac underwent another major revision surgery. Surgeons confirmed a non-union of the titanium rod and a loose L4 screw. They replaced the lumbar rods and screws, performed a discectomy, and installed a "banana cage" packed with bone graft. While this addressed the spinal hardware, it did not resolve the underlying issues of sleep and nutrition.

The Present | The Path Forward

Today, Zac is caught in a medical "Catch-22." He cannot heal from his spinal surgeries because he cannot sleep due to his airway obstruction, and he cannot gain the weight necessary for

recovery because his jaw deformity makes eating a painful struggle.

The Bimaxillary Orthognathic surgery is no longer elective; it is the essential foundation for Zac’s survival and his only hope for a life beyond chronic pain and isolation.

Key Clinical Diagnoses

● Post-Tumour Spinal Cord Injury (C3-T3)

● Spinal Fusion (T2-L4) with History of Hardware Failure

● Class III Skeletal Malocclusion & Mandibular Asymmetry

● Severe Obstructive Sleep Apnoea (CPAP Intolerant)

● Dysautonomia (Temperature regulation/Night sweats)

● Chronic Fatigue & Osteopenia

Why We Need Your Help

The public health waitlist for this complex surgery is years long — years Zac simply does not have. To have this surgery performed privately by his specialist team, the out-of-pocket cost is $40,000 AUD.

On a disability pension, this amount is an impossible mountain. Zac feels a sense of utter despair, recently saying: "I haven't had a single year where I didn't have a major challenge to deal with. My body and mind always let me down." We want to prove to Zac that his body doesn't have to be his prison. Every dollar raised goes directly toward the surgery, specialist orthodontics, and hospital fees required to give Zac

his life back. Please help us give this brave 24-year-old the chance to finally breathe, eat, and sleep without pain.

How to Help

● Donate: No amount is too small. Every bit helps us reach that $40,000 goal.

● Share: Please share Zac’s story on social media to help us reach those who may be able to assist.