If he hears a loud noise, he can have a seizure
On the NSW South Coast, a family who spent years reshaping a home into a sanctuary for their severely disabled son now faces the possibility that a government highway upgrade will undo what they built. The proposed service road, shifting closer than originally indicated, sits just metres from where Zeke Taylor sleeps — a young man for whom noise, light, and dust are not inconveniences but potential triggers for fatal seizures. It is a story as old as infrastructure itself: the needs of the many rendered in asphalt, pressing against the irreducible needs of one. The family does not oppose progress; they ask only whether every metre of it is truly necessary.
- A service road tied to a major highway upgrade is now projected to run roughly 10 metres from the bedroom of a 26-year-old man whose epilepsy can be triggered by noise, light, and sensory disturbance.
- Two doctors have put in writing what the family already knows: construction dust could devastate Zeke's lungs, and a prolonged seizure — provoked by a truck's headlights or a jackhammer's echo — could kill him.
- The Taylors reject both the compensation offers and the temporary housing provided, because no market payment can replicate a purpose-built care environment, and the alternative properties had stairs their son cannot climb.
- Stephen Taylor confronted Premier Chris Minns directly at a community cabinet meeting, and the Premier referred the matter to Roads Minister John Graham, who has agreed to examine the design.
- With concept plans on public exhibition and construction not due until 2028, a narrow window remains in which a design change is still possible — if political willingness matches the sympathy expressed.
Kim and Stephen Taylor built their Falls Creek home around one non-negotiable truth: their son Zeke requires constant supervision, every hour of every day. Over years, they widened doorways, installed hoists and lifts, and redesigned the wet room so that Kim can see Zeke from anywhere in the house. He is 26, lives with spastic quadriplegia, epilepsy, and chronic respiratory illness, and cannot speak. The house was always meant to be his forever home.
A planned upgrade to the Princes Highway and Jervis Bay Road intersection has now placed that plan under threat. The revised concept design shows a service road shifting closer to the property than the family was originally told to expect — ending up approximately 10 metres from Zeke's bedroom. Transport for NSW says the alignment is still subject to refinement, but for the Taylors, the danger is already concrete. Two of Zeke's doctors have written formal warnings: construction noise and sensory disruption can trigger his epilepsy, and prolonged seizures can be fatal; construction dust could cause serious damage to his already compromised lungs.
The family is not fighting the highway upgrade itself. Their question is narrower: is the service road actually necessary? Stephen Taylor notes that pedestrian and cycling traffic in the area is minimal. They have also declined the compensation and temporary accommodation offered, pointing out that the money would not cover rebuilding a comparable care environment, and that the temporary properties provided were inaccessible to a man who cannot walk.
At a community cabinet meeting in Kiama, Stephen Taylor spoke directly to Premier Chris Minns, describing the service road's proximity to his son's bedroom. Minns acknowledged the tension between infrastructure development and affected residents, and directed Roads Minister John Graham to engage with the family. Graham agreed to look into the matter.
The concept designs remain on public exhibition. For Kim Taylor, the ask is as plain as the years of labour behind it: move the road back a little. The family now waits to find out whether a government that has listened will prove willing to act.
Kim and Stephen Taylor built their home at Falls Creek on the NSW South Coast around a single, uncompromising fact: their son Zeke needs them watching him every moment of every day. They modified the property with lifts and widened doorways, hoists and a rebuilt wet room designed so that when Kim is in the kitchen, she can see him at all times. The open space works. It has to work, because Zeke lives with spastic quadriplegia, epilepsy, chronic respiratory illness, and cannot speak. He is 26 years old. They always intended this house to be his forever home—a place where, if something happened to them, he would be safe and secure.
Now the New South Wales government is planning a major upgrade to the Princes Highway and Jervis Bay Road intersection nearby, and the revised design shows a service road moving closer to their property than originally indicated. The Taylors were told when they bought the land that the government might acquire 20 metres of it parallel to the road. The new concept design, however, shows the corridor shifting to accommodate a service road, pedestrian and cycling links, and construction access. Transport for NSW says the alignment remains subject to refinement, but the family's fear is immediate and specific: the service road will now run approximately 10 metres from Zeke's bedroom.
Two treating doctors have written letters outlining the medical risk. One warned that Zeke's epilepsy can be triggered by noise and sensory disturbance, and that prolonged seizures could cause further injury or, in some cases, be fatal. The other cautioned that prolonged exposure to dust during construction could be extremely detrimental to his lung condition. Kim Taylor describes the sensory landscape that threatens him: headlights, strobe lights, flashing lights—any of these can set off a seizure. Zeke sleeps in the same room as his parents. If he hears a loud noise, he can have a seizure, so he has to be woken very gradually. Construction is expected to start in 2028 and take about three years.
The Taylors say they are not opposed to the road upgrade itself. What they question is the necessity of the service road. "You don't get pedestrians out here, maybe a handful of cyclists a year," Stephen Taylor said. They have also rejected the compensation offers made to them, arguing that market value payments would not allow them to rebuild something comparable to what they have created. Temporary accommodation during construction has been offered, but the properties included stairs—unsuitable for a man who cannot walk and requires constant care.
At a community cabinet meeting in Kiama last week, Stephen Taylor had the chance to speak directly to Premier Chris Minns. "You're actually moving the service road 10 metres outside my son's bedroom," he told the premier, pleading for changes to the design. Minns acknowledged that major infrastructure projects often create tensions between development and nearby residents, but agreed the family's concerns should be examined further. He asked Roads Minister John Graham to speak with them. After the forum, Graham told the family he would look into the issue.
Kim Taylor's plea is simple and weighted with the exhaustion of years spent building a life around her son's needs: "We just want the road moved back a bit. It's not fair." The concept designs and environmental assessments are currently on public exhibition. Transport for NSW says it is committed to ongoing engagement with the local community and will continue to work through property acquisition details directly with impacted residents. For the Taylors, the question now is whether a government willing to listen will also be willing to move.
Citações Notáveis
You're actually moving the service road 10 metres outside my son's bedroom— Stephen Taylor, speaking to Premier Chris Minns at a community cabinet meeting
We just want the road moved back a bit. It's not fair— Kim Taylor
A Conversa do Hearth Outra perspectiva sobre a história
Why does the service road need to be there at all, if there are so few pedestrians and cyclists?
That's exactly what the Taylors are asking. The original concept from 2021 included provision for service roads and pedestrian and cycling infrastructure, but the precise local alignments weren't defined then. Now that they are, the family sees a road that serves almost no one being placed where it could harm their son.
Could they simply move to a different house?
Not really. They've spent years and significant resources modifying this one to meet Zeke's needs—lifts, hoists, a custom wet room, an open floor plan so he can be supervised constantly. A market-value payout wouldn't let them rebuild that elsewhere. And moving itself would be traumatic for someone whose health is so fragile.
What does the government say about the medical concerns?
Transport for NSW acknowledges the concerns and says the alignment is still subject to refinement. But the environmental assessment process is ongoing, and the family is essentially asking the government to prove the service road is necessary before construction begins in 2028.
Has anyone actually measured how much noise and light the construction will create?
Not that we know of. The doctors' letters are based on what they know about Zeke's triggers—noise, sensory disturbance, dust. But there's no detailed impact assessment specific to this family's situation yet.
What does it mean that Kim Taylor mentioned being an Indigenous family?
She said it in passing, but it suggests another layer to this—Indigenous families often have different relationships to land and place. For the Taylors, this isn't just a house; it's home in a deeper sense.