2022 Wolf-Hirschhorn Conference - Port Lincoln

Our family is excited to host the biannual Australian / New Zealand Wolf-Hirschhorn Conference in Port Lincoln from Friday 30 September, 2022 – Monday 3 October, 2022.

As our friends and family know, our daughter Ruby was diagnosed with Wolf-Hirschhorn Syndrome (WHS) at three months of age. WHS is a rare complex chromosomal deletion on the short arm of chromosome 4, resulting in global delayed growth and development. Low muscle tone, combined with other elements, can make mobility difficult, with some individuals unable to walk and need mobility aids. Other common characteristics of WHS are seizures, feeding difficulties, bowel and digestive problems and cardiac defects. Social skills are generally a strength. However, communication may require devices such as PODDs, speaking devices and sign language.

We watch in amazement at our very active socialite almost ten years after diagnosis. We have faced many challenges along the way, both medically and socially, for Ruby to live her best life. WHS being rare, does not have specialists or medical units that provide knowledge or support to our families. This is why we need to meet and share our experiences and support each other. This benefits our children’s health and parent/carer and sibling support, as it can sometimes be an arduous and isolating journey.

We have created a Go-Fund-Me page, as our family would love to provide an accessible, fun, action-packed weekend to show off our beautiful area. We aim to provide lunch and dinner over the four days, with entertainment for all.

If you can donate to support our conference through money or availability of catering, entertainment, location/hosting or accommodation to provide the best we can offer for our families travelling from all over Australia and New Zealand, we would greatly appreciate it.

Our family, thank you for your support!

Ben, Brooke, Ethan, Riley, Bryn and Ruby Pugsley