Flight to US in race to beat Ehlers Danlos syndrome

Millie Hardiman (18) has Ehlers Danlos syndrome and hopes a trip to the United States brought...
Millie Hardiman (18) has Ehlers Danlos syndrome and hopes a trip to the United States brought forward to this week in the wake of Covid-19 will bring a solution. PHOTO: SUPPLIED
A Dunedin family have brought forward a life-saving trip to the United States in the wake of Covid-19.

Millie Hardiman (18) has Ehlers Danlos syndrome, a rare genetic connective tissue disorder affecting every part of her body.

She started experiencing pain when she was 13 and a-half years old, but it was not until last October she was diagnosed with the syndrome, which includes side effects such as fatigue, nausea, and digestive issues.

Mother Janine Hardiman came across an Ehlers Danlos syndrome specialist in the United States in her research, who could provide therapies not accessible in New Zealand.

"She is severely underweight and malnourished to the point her life is at risk so we’re willing to try anything."

The trip was planned for April 3, but after a conversation last week, Mrs Hardiman brought the trip forward to depart this Thursday.

An infectious diseases specialist who visited the pharmacy where she works prompted her to book the flights.

"He said we needed to leave as soon as possible or there’s a chance we may not be able to go for many more months.

"With the travel restrictions that Donald Trump placed on other countries with coronavirus, we were concerned that New Zealand might be next."

The first flight from Auckland to San Francisco was this Thursday, which the pair had booked.

"She’s at such a low body weight and she’s so sick, we can’t afford not to get her over there now."

Mrs Hardiman said the added impact of coronavirus was "just another hurdle" in the bid to get help for their daughter.

"It’s life and death, we have to get her over there.

"It’s so physically and mentally exhausting for Millie."

Millie said she was hopeful the treatment would provide some solutions.

"I’m desperate for some help."

The initial consultation would cost $3000.

The pair planned to spend six weeks overseas before returning.

Mrs Hardiman has set up a Givealittle page for her daughter which can be donated to by clicking here.

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