Edd’s off to Amsterdam but he needs help
Donation protected
Edison rose is now a 7 year old boy from Hevingham, Norfolk who is living with leukoencephalopathy with vanishing white matter disease. This is a progressive disease that effects his nervous system as the white matter decreases over time. In the last two years eddie has worked hard to keep as mobile as he can but now needs a Walker and a wheelchair on occasion as well as other disability equipment. He now has a chance to take part in a trial in Amsterdam. The trial is for a drug called Guanabenz and they are hoping that it will slow down his decline rate and possibly make his walking better as well as other areas of decline. BUT we need money to get him out there, to pay for covid tests, hotel rooms, food ect. I know times are hard now but eddie really needs are help anything you can spare would really help him and his family.
Organizer
Lisa Naftarski
Organizer
