February 18, 2018


  Our daughter’s name is Rumi Willis Cooper. She was born in to our lives on 28th March 2017 at just 2.03kgs, and our lives will never be the same. A head of thick brown hair, the spitting image of her daddy but with my own eyes staring back at me. She is the smallest human I have ever held, and she is the strongest human we will ever know. If you happen to see a photo of her or meet her in the Hospital you might see how timid and gentle she is, greeting your face with an enormous smile and bursting with her own unique personality that is larger than herself. She radiates wisdom and energy. She is tiny but she was not born premature. She is one of the rarest girls in the world. After a complicated and closely monitored pregnancy we were somewhat prepared for our uphill battle to continue for a little while longer and anticipating a NICU stay. But we could never have grasped just how hard it might be for her, and how strong she was to arrive in our world at all. Our Ru was diagnosed with Mosaic Trisomy 2, with Maternal Uni Parental Disomy 2. Our Genetic specialists at Sydney Children’s Hospital have told us that there are less than 10 cases in literature. There have been thousands of prenatal cases that all end in miscarriage, termination or stillbirth. They are uncertain of how many others currently share even part of this diagnosis, their best guess is 2-3 in the world. Our journey is probably not going to ever be like anyone else’s, or understood, but it is ours. I have been meaning to write about her, essentially introduce her for nearly the past year, but of course we can all make plans… then life happens. The past year and a half has been a blur. Of hospitals, of fleeting time getting to know each other at home. She has endured many hard days, but we are grateful to truly know how good our countless good days really are. We are slowly becoming more adapted, more confident and self sufficient in Ru’s ever changing needs. Ru is slowly growing- happier, bigger, brighter each and every day. I’m sure that all parents think that their child is the cutest, funniest little human they’ve ever met but I’m certain that she really is it! Our incredibly strong, incredibly sassy ball of sunshine. We are so grateful for the generous help and outreach she has received from strangers from all over the world. It still shakes us, and while we’re still navigating rough waters we are hoping to pay back and somehow genuinely help those who are in similar situations as us but without the same opportunity for support as soon as we can. I’m not sure what more to share at the moment as our days are ever changing, Ru is ever changing as is her health, which is deeply private to us. This used to be a place to share my journeys so I’m not expecting everyone to continue coming along for the ride now that our paths have changed. But of all the journeys I have been on, being her mum is by far the best.