Send Off The Stilwells: A Fund Raising Event that will give Harry hope.
Date and time
Location
Dick's Hotel - Upstairs Lounge
89 Beattie Street Balmain, NSW 2041 AustraliaRefund Policy
Description
Harry is our 6 year-old Balmain son who really enjoys life. He has a wonderful, warm personality and is very cuddly. In 2016 Harry commenced kindergarten and his teacher reported to us that he was getting very close to his work in order to see it. After numerous visits to various eye doctors, we discovered that Harry was visually imparied to the point where he was declared 'legally blind'. The deterioration was frightening and puzzling. Further evaluation from a neurologist revealed the devastating diagnosis of Juvenile Batten Disease - a rare and fatal neurological disorder.
Unfortunately, there is no help for Harry in Australia. Harry's only hope is in the USA where Gene Replacement Therapies are developing in clinical trials. Our family is committed to moving in early 2017 to seek participation in a clinical trial.
TICKETS FOR THE EVENT ARE NOW SOLD OUT BUY YOU CAN STILL BUY RAFFLE TICKETS OR MAKE A DONATION:
1st Prize: Australian South Sea Pearls with 18K White Gold Clasp (13-16mm Graduation)
2nd Prize: Mens TAGHeuer Watch
3rd Prize: 2 x Virgin Austrlalia Return Economy Airfares (Sydney to Los Angeles)
By supporting our event you will be giving DIRECTLY to the Australian chapter of Batten Disease Support and Research Association (BDRSA) and Harry's personal journey to beat this disease.
PLEASE HELP US RAISE FUNDS INTO BATTEN's DISEASE - BUY A RAFFLE TICKET TODAY!
We appreciate your participation and support.
Shawn & Susan Stilwell