About NZ Mito

Hi my name is Jan Flewellen.   My husband Matt and I have set up NZMito.

We lost our wee boy Caleb on the 6th of January 2010 to Leigh’s Disease.   This was a disease we had not heard of and as we already had two happy, healthy children we did not expect anything different.  Caleb came into the world healthy and we didn’t see any signs of something wrong until he was 6mths old.  We did tests and went from one diagnosis to another with no clear answers.

This disease attacked him suddenly  in 2009 and we went from a very active, talking, eating, playing little boy to one that could no longer move, eat, talk and was very sick.  We spent a lot of time in and out of hospital and then got the diagnosis of Leigh’s Disease.  We felt there was no support out there for us and there was no way of knowing if there were are other sufferers in New Zealand we could talk to. 

So we want to make sure sufferers and their families have a way to get information and be able to talk with other sufferers.