Two of our youngest family members Mary (8) and Neveah (4) Taouk have been suffering from a genetic disorder that is so rare it has no name, and until recently no possible cure. It is with great hope that we can announce, due to new research and a crowd funding push, that Mary and Navaeh have a glimpse of hope.
Mary and Navaeh are the only two people in Australia to have been diagnosed with this disorder, with just a handful of people around the world. As a result of the rare and complex nature of the disorder, there is very little funding and research being put into treatment and cure.
If you would be interested in showing your support to these strong young girls, please click the link to the crowd funding page below.
Any donation amount will be much appreciated.
We thank you in advance for all you support.