Help Zac purchase a new accessible & safe vehicle

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ABOUT ZAC

We are fundraising for an incredible young man, Zachariah (Zac). When Zac was born, he didn’t take a breath for his first 20 minutes of life. Five days later, he was diagnosed with severe Quadriplegia Cerebral Palsy. This diagnosis was just the beginning of an unexpected journey for Zac and his family, full of learning, adapting and navigating challenges together. Life was busy supporting Zac – daily therapy, specialised mobility equipment, modifying family vehicles, lengthy hospital stays when Zac became unwell, regular medical appointments, building a dedicated team of support workers, and gradually modifying the entire family home to meet his ongoing needs.

By the time Zac was only 10 years old, he required around the clock care (including active night support), which could only be provided by Mum, Dad or a specially trained support worker. Further testing soon revealed that Zac had a very rare and severe mitochondrial disorder, affecting multiple organs, which explained his increasing care needs and medical interventions.

By age 12, Zac’s medical history was vast, and he continued to prove a challenge to his team of specialists at the RCH. His growing list of diagnoses now included aspiration lung disease, Fanconi Syndrome (disease of the kidneys), paradoxical vocal cord motion disorder, severe airway obstruction, dystonia (severe and painful muscular spasms) and asthma, along with his life-threatening epilepsy (since age 2) worsening. Zac’s intermittent oxygen therapy was now required 24/7.

From age 17, Zac’s oxygen needs worsened again, which meant he required a continual supply of humidified oxygen. In other words, Zac now needed access to a power source 24 hours a day to run his Airvo device, which initially left him housebound. However, his parents refused to accept this, and thanks to their initiative and creativity, they designed a medical trailer that included a mobile power source (inverter) and space to house all of Zac’s medical supplies and equipment. This saw Zac regain his freedom to access the community again. The trailer is used every day and is towed by his powered wheelchair. The only downside is that his trailer is the equivalent of a second wheelchair in terms of its

size and weight (due to the inverter, 3 oxygen tanks and amount of medical equipment and supplies it needs to hold).

ZAC TODAY

Zac is now a 6 ft tall, 22-year-old man who loves to explore and express his creativity, has a great sense of humour and is a true lover of life! He has a beautiful smile and a contagious laugh that can brighten anyone’s day. Zac’s physical and medical needs are unique and complex and require constant support of 2 trained support people, who can respond both to his array of daily care needs, and also any unexpected emergency situations that arise. These emergencies occur multiple times a day, at any hour, predominantly because of his unpredictable epilepsy and severe airway obstruction (both of which require immediate interventions to ensure his safety).

WHY WE NEED YOUR HELP

Due to Zac’s significant physical growth and his complex medical needs, his current vehicle (a Toyota Hiace) can no longer safely transport him for a variety of reasons. A hoist is used to get Zac in and out of his vehicle, which requires him to be unplugged from his power source/oxygen, while the wheelchair and trailer are loaded individually. In emergency situations, such as treating one of Zac’s tonic clonic seizures (where he stops breathing), two people need to be able to work around him in the vehicle to provide his

seizure management care. This process involves transferring Zac’s wheelchair into a reclined position, administering intranasal medication, providing bag and mask ventilation, and closely monitoring his recovery. Zac’s Toyota only allows one person to travel in the back with him, and once Zac, his wheelchair and trailer are onboard, there is no accessible space for 2 people to work safely and efficiently.

NDIS has a strict criterion that needs to be fulfilled before they will agree to fund vehicle modifications. Zac is unable to find a second-hand vehicle that both meets his needs and the specific criteria of NDIS. After consulting with various vehicle conversion companies, it has agreed upon that the most appropriate option for Zac is to upsize to a Mercedes Sprinter LWB. The estimated cost is $115,000. This vehicle would enable many positive additions for Zac and his safety while travelling, including:

- A wider hoist, which allows the equivalent of 2 wheelchairs to be hoisted together, side by side. This would mean Zac doesn’t need to be detached from his oxygen, as his wheelchair and trailer can be hoisted into the vehicle at the same time.

- Additional space for extra seating in the back. This would enable an additional support worker/s to travel in close proximity to Zac. When Zac is out and about in the community, he needs 3 support people (minimum) – a driver, and 2 trained workers.

- Accessible space for 2 people to safely work around Zac, when responding to an emergency or treating a seizure. At present, the limited space and obstacles create a stressful and unsafe working environment for support people and Zac.

- Access for the person in the front passenger seat to walk through to Zac, to help in an emergency.

- Additional storage capacity for bags and supplies to be safely stored behind Zac. Currently, his bags and supplies are stacked around him, which creates obstacles (in an already small space) for his support team during an emergency.

So, Zac has been left with no option but to purchase a brand-new vehicle on his own. Zac and his parents can contribute $60,000. This is an urgent and essential requirement for Zac. Without a suitable vehicle, it is unsafe for Zac to attend his regular medical appointments, access the community, be part of family holidays and explore life outside of home. Zac also needs to have a vehicle that has had an inverter installed, to enable his equipment to be plugged in when travelling, and to always give him a back-up power supply, if his trailer runs flat. For these reasons, Zac is also unable to use a taxi service or

other vehicle outside his own.

Day to day life is challenging for Zac, and often revolves around his medical needs, so day outings and quality time with his family on holidays are among his favourite things to do. Opportunities to leave the house and explore new places, brings Zac much joy and adds value to his life. Team Zac have come together to organise a fundraiser to support Zac to raise the remaining money needed for his Mercedes Sprinter LWB!

We are seeking donations to help Zac achieve this goal, feeling safe is something everyone should get to feel. Every cent makes a difference, thank you so much for taking the time to get to know our special friend, Zac.