Supporting James' Rare Journey
- $22,759.24 donated
- 956 generous donors
James is a 4yr old boy with an extremely rare neuromuscular condition. He is loosing his motor function.
In July 2016 we noticed that James, then aged 3, was losing his ability to swallow food and that he was losing his balance whilst walking. Fast forward to June 2017 and he has lost his ability to walk, form sentences and has to be fed through a key port directly into his stomach.
But through all this James continues to smile and light up everyone's life.
James has an extremely rare condition that is affecting his brain, and subsequently his nerves and muscles. As yet Doctors have no name that they can give his condition. It has been, and continues to be, extremely scary, sad and frustrating for everyone involved. His case notes have gone to the top Neurologists in USA and NZ and everyone is stumped.
James now relies on a wheelchair to get around. Just this past month his ability to crawl has gone. Because of this he uses a power wheelchair, which is big and not able to be folded or broken down for transporting.
James currently has weekly physio and occupational therapy appointments, and in the past 2 months has required stays in hospital as his condition diminishes.
As a family of 5 we can no longer use our family car to take James out, so we are desperately trying fund raise for a mobility van to get his chair into. We have been holding events trying to raise money but we are still a long way off.
We are extremely thankful to Tuohy Homes for the widening of our doorways. You guys were awesome.
Page created by:
I'm James' mum and I am thankful to everyone who is helping us on this journey.
All funds raised benefit:
Funds will be paid to a verified bank account of Nicola Swan on behalf of James Swan.
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