Questions

Genetic interpretation is getting better every day, but we still have a long way to go before we can identify all the faulty genes. It may be you child has a combination of faulty genes or has more than one syndrome making it extremely difficult for geneticists and researchers to identify the exact faulty gene or syndrome your child might have.
However, although having consultations with a range of specialists and seeking out a range of services and resources might seem frustrating at the time, it is important. Everyone has their niche area and everyone has something to offer. In the end, everyone is working for the best interests of your child.

Genetics is a fluid science and new discoveries and research is taking place everyday. It is still evolving and testing gets more accurate over time. Geneticists recommend a consultation every two years.

The current disability sector in Australia is fragmented and many clinical, allied health and support services may be engaged to provide the overall care for someone with a disability. Different parties involved in your child’s care may not always communicate effectively or efficiently with other specialists or services. Hopefully with the introduction of the National Disability Insurance Scheme the system will improve this.

However, although having consultations with a range of specialists and seeking out a range of services and resources might seem frustrating at the time, it is important. Everyone has their niche area and everyone has something to offer. In the end, everyone is working for the best interests of your child.

The current disability sector in Australia is fragmented and many clinical, allied health and support services may be engaged to provide the overall care for someone with a disabilitiy. Different parties involved in your child’s care may not always communicate effectively or efficiently with other specialists or services. Hopefully with the introduction of the National Disability Insurance Scheme the system will improve this.
However, although having consultations with a range of specialists and seeking out a range of services and resources might seem frustrating at the time, it is important. Everyone has their niche area and everyone has something to offer. In the end, everyone is working for the best interests of your child.

Spread the word and let the broader community know there are a large number of children without a diagnosis.
Form close links with health and social care experts both in Australia and overseas so they can create a more positive experience when liaising with parents/carers of undiagnosed children.
Lobby both the private and public sectors to create awareness and attract more funding for genetic research.
Support others, who are in a similar situations to yourself.