Supporting James' Rare Journey
James is a 4yr old boy with an extremely rare neuromuscular condition. He is loosing his motor function.
Wellington
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.
Nicola Swan's involvement (page creator)
I'm James' mum and I am thankful to everyone who is helping us on this journey.
Use of funds
Mobility Van
Widening doorways
Other page links
Latest update
James keep fighting 14 June 2017
A snap shot of where James is at.
* James won a trip to Disneyland through a photo competition but sadly this had to be cancelled as he's no longer stable enough to fly such a long distance.
* He has had 2 stays in hospital over the past month. His body is finding it hard to fight virus' and bugs. His autonomic nervous system no longer functions properly. His body struggles to regulate temperature, heart rate, bowel and bladder etc. this is a frightening step in the condition he has.
* We had applied for Lottery funding to help with the mobility van fundraising but were turned down.
* James has circulation issues, his feet are often like ice. We need to use merino wool as much as possible to keep his feet, hands and head warm.
* We are extremely thankful to Air New Zealand and Colgate NZ for turning our American trip into an Australian one and giving us as a family the chance to take 2 weeks holiday on the Gold Coast in Australia in June. Looking forward to making happy memories for James and his brothers, and us all as a family.
Thank you for your continued support.
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Who's involved?
