James' is 4, his life turned upside down in July 2016. James has a rare neuromuscular disorder that is robbing him of his body functions.
Wellington
James is so rare to date there is no name for his condition. In July 2016 he was admitted to hospital where he stayed for 2 weeks as he had stopped eating, and was incredibly wobbly on his feet. Since then our lives have been a roller coaster of medical appointments. James is now in a wheelchair and tube feed. His speech is hard to understand and he has moments where he blanks out. James' fatigue levels are extreme and his gut no longer works properly. James' decline has been rapid and no one can tell us how long we have with him. We know it's limited so we will do everything we can to make his time here memorable for him, his 2 brothers and us his parents.
I'm James' Mum. Watching your child decline daily with no cure in site means I'll do anything to give him memories while we still can.
6 weeks before James became unwell we purchased a house based on our 2 incomes. Overnight we were plunged into a one income family. We do not have the funds to give James the experiences he deserves. We only just make ends meet. All funds will be used to create amazing memories eg. A trip to diggerworld in Invercargil NZ, a helicoptor ride, a family holiday to Queenstown where he can visit his old play centre etc.
Your message will be displayed on the page and emailed to the donor.
Your new message will also be emailed to the donor.
Saving a blank entry will delete the current comment.