Millie Hardiman has Ehlers-Danlos syndrome, a genetic connective tissue disorder affecting every part of her body, and had brought forward a trip to the United States to see a specialist in Denver this week.
Those plans were advised against and instead, a tele-medical consultation will take place with the specialist over the internet on March 31.
Mother Janine Hardiman said on Monday the difficult decision was made to postpone the trip.
‘‘I spoke to our paediatrician who said it was way too dangerous to be going over there.’’
‘‘It was devastating — Millie is gravely ill and cannot access the diagnostics and treatments here in New Zealand that could be life-saving.’’
Millie said she was initially disconsolate to hear the news.
‘‘What are the odds of not only being so sick and desperately needing to travel, yet not being able to due to a pandemic.
‘‘I’ve come to accept the situation as there is nothing I can do to change it.’’
The alternative option of a consultation was giving the family some hope.
‘‘It’s lifting our spirits.’’
Mrs Hardiman was told the national regulations for tele-medicine visits in the United States had been relaxed in the wake of coronavirus and could conduct new patient consultation visits during the pandemic by phone or video.
Concerns were high around the spread of coronavirus and the risk of Millie catching it, she said.
‘‘She is definitely at a higher risk of complications if she gets it.’’
Mrs Hardiman has set up a Givealittle page for her daughter which can be donated to by clicking here.
