We have had to CANCEL the Fndraising trivia night, unfortunatly due to a few circumstances outside of our control. however please consider donating the value of the ticket $30 or any amountyou would like to support this special little girl - Diyanna.
On the 10th of June 2015, Diyanna was born, 7 months later after many tests and appointments she was diagnosed with a severe form childhood epilepsy.
A degenerative neurological condition that has no cure. Specialists say that children with this case rarely survive childhood.
In February this year Diyanna's parents found out that she is one of only 20 known (and the only one in Australia) cases of a new gene mutation which causes Epileptic Encephalopathy, Movement Disorder and severe Developmental Delay. This condition means that she can have up to 500 clinical seizures on a bad day. She cannot hold her head, roll over or sit. Her ability is limited to a two month old baby. Because of this Diyanna requires 24/7 care and also a lot of different equipment and modifications not only to help her but also to help her family take care of her. Her parents want to give her the best quality of life and want to make the best of all the time they have with her.
This is a short story of the difficulties this little girl and her family face. The challenges are faced daily and the struggle gets tougher as she gets older.
A few of us have decided that we would like to help ease the burden financially for this family as they are not recieving any Government funding, due to this being an extreme rare condition. Rare is special to us and we want to do all we can.
[We are hosting a Trivia night at Welcome to Thornbury in Melbourne on the 31st of August, to help raise as much funds as we can.] CANCELLED!
We understand that not all of you will be able to attend, but would still like to support this worthy cause. If you know of anyone that would like to attend the event, please get in touch with Dinushka or Jackie
Every dollar you donate wll help towards making Diyanna's time with us comfortable, and hopefully towards helping find a cure.
We will report back to you at the end of the fundraiser, on how funds have been used.
please dig deep and support this little girl and her family, through this time. Together, we can make a difference in her life.