Hi, my name is Mahalia Mabo. I am the mother of three wonderful children, two daughters and a son. Our precious son, Neiko, has had a very difficult journey throughout his short life already facing so much heartache and discrimination due to his complex needs. As you may be aware we finally, after 4 years of working towards a diagnoses, got our appointment with a paediatrician. Sadly and unexpectedly, Neiko was diagnosed with an incurable and rare genetic neurodevelopmental condition called microcephaly. This condition is a lifelong impairment and affects brain growth and development. While it is typically picked up in utero or within the first year or so after birth, all the evidence and signs were some how missed. We will not know the full extent of how this has impacted his brain until we have an MRI, which can only happen once his hyperactivity is medically managed. All of the paediatric and diagnostic tests we will need to do are not covered by his current NDIS.

To make this situation even more difficult in February this year my car stolen and destroyed, and I have not been able to replace it, which I will need to do in order to take him to his appointments. The past 10 months have been hard on our family but this latest news has absolutely brought us to our knees. As much as we would rather not have to seek out help, we are at a loss to how we can manage the financial burden of navigating this new and terrifying part our lives.