JordynRose loses battle with disease
The funeral of JordynRose Timms will be held today after she lost her battle with Batten Disease.
JordynRose, 19, died in Timaru on Tuesday from the disease, which is an inherited disorder of the nervous system.
Her brother Brad, 21, also has the disease. He is now one of only four people in New Zealand with the condition.
Brad, along with his parents, Mark and Ra Timms, travelled to London for the first worldwide meeting of the Batten Disease parents organisation earlier this year.
Brad and JordynRose's cousins, Ashleigh and Jamie Lee McKenzie, along with their friends, completed a charity bike ride in January to help the family make the trip.
Mark Timms said the family discovered a drug trial in London, which Brad was taking part in. The non-funded drug, called Cellcept, is also used as an anti-rejection drug for organ transplant patients.
"The trip to London was fantastic - it was the best thing we could have done at the time. It was really good for us as far as finding out more information and we've got Brad on a trial drug as a result of that trip. It's not a cure, but it's to slow down some of the symptoms."
Brad has been on Cellcept for six weeks and is due for his first test to find out how beneficial it has been.
Mr Timms said he was grateful to friends, family and the community for their ongoing support.
"It's been overwhelming to be honest."
JordynRose's funeral will be held at 1pm at St Thomas' Church, Timaru.
- © Fairfax NZ News