Genetic testing has confirmed Northland six-year-old Mackenzie Campbell has a condition fewer than 100 people have worldwide.
The devastating news was delivered to Mackenzie's parents Rochelle and Chance earlier this month after they watched their oldest of three children lose her ability to walk and talk.
Tests done in the United States showed Mackenzie, due to a gene mutation, has Rapid-onset dystonia parkinsonism, which she will have for the rest of her life.
There's no available medication that is guaranteed to help at this time.
"It's good to finally have a diagnosis but it's definitely not the one we or our medical team were hoping for," Rochelle said.
"We are obviously heart broken with this diagnosis as it's probably the worst outcome for Mackenzie and our family. There's no medication at this time that's available.
"She is still progressing positively in ways each day, getting stronger and really really trying but the reality is that this is going to be a lifelong battle for her and us, and we can only hope her determination and will to continue to progress continues."
The heartbreaking story began on January 28 this year when over the space of two hours, the normally bubbly Mackenzie lost her ability to walk, talk or control any movements.
Rochelle, a nurse at Whangārei Hospital, was immediately aware something was desperately wrong with her daughter.
Mackenzie, a Hukerenui School student, was rushed to hospital where she had an MRI scan, showing swelling around her spinal cord.
Unfortunately she didn't recover well from the general anaesthetic and was taken in a midnight chopper ride to Starship Intensive Care in Auckland where she progressively got worse, was unable to move voluntarily and had painful spasms.
Despite extensive testing the results showed nothing abnormal except for the spinal cord swelling. She was started on a wide range of medication in the hope something would help.
Mackenzie was moved to the neurology ward at Starship for eight weeks. Amidst the devastating news Rochelle and Chance decided to go ahead with their wedding and on March 7 tied the knot.
Two days later Mackenzie was medically stable and was discharged to the Wilson Rehabilitation facility on the North Shore. Two weeks later Covid-19 hit and the family decided Mackenzie should return north so they could all isolate in the same bubble.
Rochelle said she was grateful family were able to care for the couple's other two children aged 2 and 4 while we were in hospital - but to be home and together again is a relief.
However, the plan was to hopefully return to Auckland for rehabilitation at some stage soon.
Now the Northland equestrian community is rallying behind the family and are holding a fundraising show jumping and cross-country event at Ben and Jan Wood's property in Glenbervie this weekend.
Before starting a family Rochelle was an accomplished equestrian competitor, riding grandprix pony showjumping and representing Northland at eventing.
Her parents Terry and Karen Frost and their family have been valued volunteers in the sport, always ready to muck in and get stuff done when needed.
Event co-organiser and long-time friend Juliet Proctor said the fundraiser was an opportunity to help a friend and family in need.
"We've known the family for years and they are great people. You feel a bit helpless when something like this happens to a friend and this was the best way we could think to help," Proctor said.
"The response has been absolutely fantastic - testament to how much everyone wants to be able to support them. We have loads of people offering all sorts of help, donating things to raffle."
And the response from those who could not make the event has been amazing with donations being made to a specified bank account for Mackenzie.
Riders have been given specific times slots so that the event complies with the necessary Covid-19 regulations for sporting events.
If you would like to make a donation, Mackenzie's account is 01-0487-0390580-00 and put your name as a reference.