Living with Trisomy 18 / Edwards Syndrome tells the story of your daughter Melissa and the struggles you all faced. Why was this an important book for you to write?

I felt the need to share our amazing experience in caring for a daughter who had been given the diagnosis of Trisomy 18 and being told in the first week we would be lucky to make it out of hospital and she would be unlikely to reach her first birthday as this diagnosis was incompatible with life. For this reason every day counted and I wanted to make happy family memories.

What is a common misconception you feel people have about Trisomy 18?

That these children cannot/will not achieve milestones.

Their 24-hour care is too difficult.

Each child is different and therefore time is the real thing that identifies what is required to manage their needs.

In New Zealand these children would be unlikely to receive medical procedures to improve their quality of life.

I appreciated the candid nature with which you told your story. What was the hardest thing for you to write about?

Being honest was necessary so people could have a better understanding of how difficult and scary providing 24-hour care can be with all the feeding issues and caring for the family’s needs as well. This sharing for me needed to be as it was so people could really understand. Having a non-verbal child able to indicate to me what was wrong was amazing and even her pediatrician was amazed how we learnt to manage Melissa’s needs.

What do you hope is one thing readers take away from the story?

As a family we wanted Melissa to live life – she did. She rode her adapted bicycle in the house with assistance and enjoyed every minute of it. As her body slowly developed, she played ball while using a standing frame, she went horse riding with amazing support {the only morning of the week she would eat her breakfast without fuss}. The local swimming pool gave us a time we could go when there were not many people there and she loved that time there. For a short period, she spoke a few words but then stopped though still communicated with her carers and family non verbally. Melissa showed us who she trusted (she refused to eat if she did not trust them feeding her). Melissa taught me so much about life I treasure every minute we had with her in spite of the high toll it took on our lives.

I believe that the rainbow that appeared at her funeral confirmed her life was meant to be, I feel privileged to be her Mum and to be able to share our journey.

Author Links: GoodReads | Website