Sarah Macdonald lives in the Wairarapa and sadly her baby Jay died last year of a very rare genetic disorder.
In February she was interviewed by Stuff about their journey and it was published in the Sunday Star Times.
She wants to share this article with you and encourage you to share it with your colleagues and networks throughout New Zealand. She hopes this article reaches medical professionals and support services - as well as other parents navigating rare journeys - so families can gain better support.
Have a read of Jay's journey here: