A Dunedin family have taken the drastic step of selling their home to fund a trip to Spain, seeking help from one of only a handful of surgeons globally capable of carrying out a potentially life-saving procedure.
Millie Hardiman, 21, underwent major abdominal surgery in Malaga earlier this month for conditions associated with hypermobile Ehlers-Danlos syndrome, a rare genetic connective tissue disorder she has struggled with for more than seven years.
Mother Janine Hardiman said her daughter’s recovery was “brutal”, although she was staying positive and was making good progress.
However, without help, they would be in a dire financial situation.
The surgery cost $98,000, but the trip would total $140,000 - including business class flights so Millie could lie down.
After previously remortgaging to fund treatments for the condition, they sold their home in late 2022.
The years-long push to find help for her daughter had been difficult, but this was the hardest thing she had ever done.
Millie’s vascular compression syndromes, which affected blood flow and could be life-threatening, had become progressively worse to the point of being critical.
A trip to Germany in 2021 for potentially life-changing surgery had been traumatic rather than transformative, as the doctor decided after their arrival he was unable to operate.
“Millie’s body weight was too low and she was severely malnourished and couldn’t get strong enough.
“There are only a handful of surgeons in the world who are capable of this surgery; Dr [Alejandro Rodríguez] Morata here in Spain, a small handful in the US - but the wait time is much greater there.”
Pain from the condition was similar to that of end-stage pancreatic cancer and eating and drinking were extremely difficult.
Her daughter had lost a lot of weight and had been severely malnourished, at times nearly dying.
Ehlers-Danlos syndrome was poorly understood in New Zealand, and especially so in Dunedin, Hardiman said.
The lack of recognition also affected the family finances, as Millie’s Ministry of Social Development supported living and disability allowances and her own carer’s benefit had been stopped while they were overseas.
“There are so many catch-22s - in order to have the benefits while overseas the medical treatment must be for an approved Ministry of Health treatment; in order to get a private health insurance overseas travel allowance, the surgery must be an approved Ministry of Health surgery.”
Because the situation was urgent, she had taken action to get to Spain as fast as possible rather than waiting to raise funds.
However, she had now set up a Givealittle page in the hope people would help.
“Having financial help will mean that Millie can have the best possible recovery, and still have money to survive and live without fear of not having enough money for basics like rent, food, power and basic medical care.”