Wheelchair vehicle desperately needed for my son

Summary

My son, Michael, was born in July 2018, with a rare metabolic illness, Ornithine transcarbamylase (OTC) deficiency. To survive this illness, Michael had a liver transplant at eight months old, in February 2019. Although Michael’s condition isn’t life-threatening anymore, the side effects of the OTC have left permanent complications that need to be closely monitored through medical specialists, multiple therapies and medication. To closely monitor Michael and take him to essential appointments, his mother had to quit her full-time job and become his full-time carer.

Michael requires a modified car, which will allow him to be wheeled in and seatbelted into his wheelchair. NDIS will pay for the modifications, however, I am required to provide an eligible car. Unfortunately, only a few cars are suitable to be modified, specifically the Hyundai Startia 2021. This particular model can cost up to $60,000.

My 5-year-old son, Michael, has gone through enough pain and suffering within his first few months of life, that most people will never receive in a lifetime. Asking for help is something that doesn’t come easy for me. Help me, help my son. Give this innocent child one less complication in his life. I have tried exploring other options, but haven’t been successful or even lucky. I am at the end of the line, please help me.

Extended Addition

What is OTC?

A critical enzyme that plays a role in the breakdown and removal of nitrogen in the body, was missing from his liver. Unfortunately, males born with OTC have a more severe disease than seen in females, which causes complications, high mortality, and morbidity.

For more information on OTC: https://www.ncbi.nlm.nih.gov/books/NBK537257/

Michael’s complications

Liver failure (due to liver transplant)

Immunocompromised (increased risk of contracting illnesses)

Asthma

Eczema

Epilepsy

Cerebral palsy

Developmental delay

PEG fed

And more

For further clarification and confirmation of Michael’s conditions or to contact me directly, please refer to these websites:

https://www.heraldsun.com.au/subscribe/news/1/?sourceCode=HSWEB_WRE170_a_GGL&dest=https%3A%2F%2Fwww.heraldsun.com.au%2Fnews%2Fvictoria%2Fgift-of-new-liver-saves-baby-michael-despite-many-health-scares%2Fnews-story%2F61c3c21da340b128b124b89eb2b5d8dd&memtype=anonymous&mode=premium&v21=GROUPA-Segment-8-NOSCORE

https://www.kidsnews.com.au/explainers/michael-theobald-has-just-turned-one-and-his-greatest-gift-was-the-donated-liver-which-saved-his-life/news-story/80d264a2837b209982b06734ca533faf

https://dandenong.starcommunity.com.au/news/2022-07-14/life-giving-donation-for-michael/

Why do we need a car?

It is of paramount importance Michael has a reliable form of transport to get to the hospital emergency department (as needed), medical appointments, therapy sessions, kindergarten, school, and access to the community. Michael will be using the vehicle daily to access these services and supports.

As Michael is a growing boy and is unable to move around independently, he requires his mother to physically lift him in and out of the car. This repetitive action has taken a physical toll on her body, leading to regular chest fractures, and inflammation along her chest and back.

Due to Michael’s low immune system, he is more susceptible to illness, so catching public transport will make him more likely to catch illnesses.

A side effect of an irreplaceable medication Michael ingests causes him to be more susceptible to skin cancer. Therefore walking to kindergarten is risky.

Taking a maxi cab costs about $160 per trip to his hospital from his house. Therefore, not affordable long term.

Which car?

Michael is eligible according to NDIS to receive funding to get a vehicle modified. Unfortunately, there are a select few vehicles that can be modified to suit Michael’s needs. One particular vehicle is the Hyundai Staria 2021.

A second-hand Hyundai Staria 2021 can cost up to $60,000.

For further car information:

https://www.freedommotorsaustralia.com.au/new-vehicle-wheelchair-accessible-conversions/

https://www.carsales.com.au/cars/?&q=(And.Service.carsales._.Year.range(2021..2021)._.(C.Make.Hyundai._.Model.STARIA.)_.SuburbPoi.poi(Lyndhurst%20VIC%203975x50km).)

Other means of funding

In November 2022, I sold my Mitsubishi Outlander 2019, so I could purchase a second hand LDV G10 2017 (a car eligible to be modified for Michael).

The LDV has been nothing short of a nightmare. The first day, Michael’s mother drove the car to the hospital, and the engine overheated due to a blown head gasket. Fortunately, the dealership offered to pay for repairs. However, in August 2023, the head gasket was blown again and topped off with flooding in the engine. Essentially, the car cannot be repaired as per our mechanic and RSCV. I’ve lost $22,000, and now have no form of transport to take my son to essential appointments.

Due to being a sole trader, I haven’t been successful in getting a car loan. Michael’s mother hasn’t been able to get a loan because she isn’t working. There hasn’t been any success with receiving funding from charities. And extended family aren’t in a position to lend money.