Hi, my name is Tina and I’m reaching out to our local community and beyond to help raise much needed funds for Saylah. Our beautiful friends Aaron and Teressa have a truly amazing and beautiful little girl Saylah who is turning 2 in November. Sadly this beautiful family got the worst news any parents could receive. Saylah has been diagnosed with an extremely rare disease which is terminal and now she is in palliative care. Saylah’s diagnosis is Batten disease (CLN1) and Saylah is the second child in all of Australia to have this terminal diagnosis. There is no cure for this disease but Saylah can be apart of a trial in the US to slow down her progression or even stop it. Saylah has lost the ability to walk , talk and eat by mouth. Saylah has started having seizures and will lose her vision and her full mobility in the near future. This beautiful family needs our support more than ever so if you can please donate or make this page go viral Aaron, Teressa and Saylahs siblings will be forever grateful. All money raised will see Saylah be apart of this gene therapy trial in the US covering travel and accommodation costs, medical and travel costs to all her therapies that she attends weekly and to allow this family to take a much needed family holiday to make ever lasting memories with Saylah as a family. Saylah has my heart and anyone who has the pleasure in meeting Saylah will feel the same way I do about this little girl. She is one in a million and we want to make a difference for Saylah. X